“Every day I get to be with Sebastian I am completely amazed and grateful to have the time with him, for he teaches me many things about what is really important in this life.”
It had been my intent to start a chat with a particular mom from the Batten community at an earlier date, however I had always been busy or it was too late in the evening. Finally, on a Saturday I made contact with her and I was so happy that I did. The conversation just flowed and it was very meaningful to me. We talked about her precious daughter and how she was such a fighter. This mom was so happy that was the case and appreciative of the fact that they still had her daughter present in their home. She expressed to me her appreciation for what I was doing with my blog and for the fact that I have taken up the cause of the Batten community. It is so easy for me to be involved because I truly love being given the opportunity to do my part in everyway that I can. May I never forget that it is an extreme privilege that I am being granted with each story that I am allowed to write. You have no idea how much I appreciate being allowed to do this!
Have you heard enough from me yet about my son Benjamin? Have I gone too far with the explanation of what it means to be Benjamin’s Daddy? I’m sorry if I have overdone it a bit but I would ask that you bare with it for a while longer. Benjamin is rare in a sense although he does not necessarily have a fatal condition. I have never meant to give you the impression that he has a rare disease. Like I have already stated previously, I only use his example to show the ways in which we can relate to parents that have a child with a truly rare and fatal disease. Benjamin only has a genetic disorder that has never received a diagnosis. It is inherited, however we do not have a complete history and therefore do not know what the future holds for him.
I have failed as a parent in many respects. We had a lot going on in the house when the kids were in their formidable years. I feel like there are many things that I may have done better and differently if I had it to do over again. We survived though and here we are. When it comes to Benjamin, it was easier to be his dad in many respects. Some of the challenges that came with raising his two “normal” brothers didn’t exist with him. I have always adored this guy Benjamin. Can you blame me? His happy disposition and total charm speak for themself. I have said it before and I will repeat it here. Being a parent to a son with special needs has increased my sensitivity to children and young adults with rare and fatal diseases. In particular, Children with Batten Disease. It is also true that being involved has helped me to appreciate him all the more. Does this mean that I am unaware of things such as pediatric cancers and things of that nature? No, not at all! It’s just that I have now written about those in the Batten community enough that I have developed a special appreciation for the journey that they face as families. I love my son Benjamin, and I don’t mean just a little bit! He is much of what is the center of our world. Much of our day is spent helping in ways that he is not capable of helping himself. Parents of children with Batten Disease do the same thing. Only for them, the amount of help and sacrifice is often much greater. In fact, as the journey continues, more and more is asked from mom and dad.
When it comes to the position of being an advocate for greater awareness and a cure, it seems that women often take on the larger role. Often times when I write the story, we are talking about a single mom. It makes me wonder if having a special needs child puts a strain on a marriage. What if your child has a fatal disease? Does the stress of being in that situation get transferred to the marriage? Well I won’t discuss that at the moment, but it is worth thinking about. The point that I wanted to make is that when it comes to advocating for a cure for something like Batten Disease, women seem to be having a more active role. All of this is based on my own observations of course. There are some exceptions. Many of the households that are involved still have complete families and maybe dad has to work a lot of hours. I think that a lot of what I am basing my assumption on is the fact than most all of my friends who are co-advocates are women.
There are, of course, dads that are strong advocates for their children who have Batten Disease. Christopher Velona is an advocate for finding a cure. He is that, and so much more! Chris is a very active member of the Batten community. We originally met on Facebook of course. It was very easy to tell how much he loves his son, Sebastian, who has Batten Disease. Christopher is one of the exceptions to the norm that I was thinking about when it comes to advocacy work. He is on a journey with his son and is taking action in a most extraordinary manner. To say that he loves Sebastian profusely would be an accurate statement and the action that he is taking, is in large part, the subject of this particular blog entry.
I did all the usual things in introducing myself to Chris and in getting information for the blog. He told me that anything in addition could be discussed over the phone. We ended up doing an interview over Skype and I am so glad that we did. It was quite an experience for me! I feel that I was able to get a better idea about the person that Christopher is, but there was something more to it. I got to meet Sebastian! What a rock star this kid is to me! As the interview went on, Sebastian would pop in and out, asking his dad questions. Chris was very patient with him and it just left me with a smile on my face. At one point, Chris asked if Sebastian would like to say hello and so he did. This to me was just priceless! There was two or three times that Sebastian appeared in the screen to check in, only it was at different angles that he looked at me as he spoke. This just made me giggle inside. What a rare character this kids is! I have to tell you that this left a real impression on me. It was an extreme pleasure to meet him! Perhaps part of it is that I have grown to love these kids in a big way. It is, however, also because Sebastian is a rock star all by himself! Let’s tell his story.
Sebastian Paul Velona was born to Christopher and Teresa Velona in the city of Glendale California. Just like any young couple, they had big plans for their future. A life together, success, and a healthy family were all part of the plans that they had envisioned. Many of those plans started with the entrance of their little bundle into this world. That all began as they first held Sebastian on July the 18th in 2003. He was perfect in every way. He had all his fingers and toes, and yes, you guessed it. He was delivered to the showroom floor complete with that new baby smell!
As Sebastian continued to grow into their little man, he would meet many of his milestones and their expectations for him were without limit. Chris and Teresa’s pride in their little family was multiplied by two as they welcomed Sebastian’s little brother Gage to the family in June of 2005. How excited they must have been! Both of the boys would go through that stage of life that every parent longs to see. Yep. The Terrible Twos! Chris would tell me that other than that, Sebastian and Gage were two of the funniest kids that he had ever had the pleasure of being around. As the boys continued to grow their parents took every challenge in stride. This after all was part of being a family.
Chris said that Sebastian was just like any other toddler and as he continued to grow, so did his list of favorite activities. He liked sports such as baseball, soccer, and golf but Chris said that he truly loved riding his bicycle, his razor, and little cars. Innocent childlike fun was the order of the day for little Sebastian and all was just fine. No one would suspect that there was a hidden challenge in store for this family. The beginning of what would become a journey that would never have been suspected took place. This was while the family was on vacation in Maui. Sebastian had his first seizure. This took place in the late summer of 2009 and it would change everything. All of a sudden, they had a health concern for which they sought answers. Chris and Teresa consulted with a doctor that treats epilepsy and he examined Sebastian. They were told that their son was just fine but they would talk about placing Sebastian on medication if another seizure occurred. Sebastian would, of course, go on to have another seizure.
He was immediately placed on seizure medication but it would not be as simple as that. Sebastian had a terrible time when it came to the side effects associated with the medication. As Chris would put it, “Sebastian is the poster child for all things, side effects… If it was a warning on the side of the medication bottle, Sebastian had it. Just awful.” Chris would go on to tell me that with some of the meds, Sebastian’s seizures seemed to actually get worse. This is not the first time that I have heard this from a parent that was looking for answers to their child’s seizure problem. The medications would also cause behavioural issues in Sebastian. According to Chris there were also issues with weight gain and weight loss. My own son, Benjamin, takes meds for a seizure disorder and has for a very long time now. For him, things were always much simpler and the medications have done their job for the most part.
How frustrating it must have been to try to control the symptoms for a disease that had not yet been properly diagnosed. The seizures would begin to become more severe and more frequent. My heart goes out to Sebastian and his parents as I think about what life was like at that point with all the problems and uncertainty. Sebastian would at this point be diagnosed as having Tonic-Clonic (also known as Grand-Mal) seizures by a UCLA Neurologist. These seizures can cause a loss in consciousness along with muscle spasms and jerking. They are very alarming to any parent or caretaker. Christopher stated that the seizures would sometimes result in injury from a fall. As he would put it, “Often times we were rushed to the emergency room to stitch him up…”
What this family would go through sounds all too familiar to someone that has been on the same type of journey. Chris said that they began mixing different medications into Sebastian’s daily schedule in hopes of curtailing the behavioral issues and frequency of seizures. There was a six months period in which this seemed to show promise but their optimism was short lived. In Chris’ words, “ We thought we were out of the woods as they said that most children grow out of seizures or epilepsy all together, but things were changing and it was not his Epilepsy.”
Sebastian’s vision was changing and he was having problems seeing things. The Velona’s did what any parent would do. They took Sebastian to the eye doctor at which time he was prescribed glasses. The glasses would do nothing to help Sebastian’s vision. According to Chris his son was not able to do simple things like catch a baseball or find things that were right next to him. This was taking place as Sebastian was approaching his eighth birthday. Sebastian’s parents decided to take him to the Jules Stein Eye Institute where they were told that he had Retinitis Pigmentosa. Much like with Rod/Cone Dystrophy the term covers a broad range of eye conditions. In Sebastian’s case, the rods and cones are missing completely. According to Chris, the family was told that Sebastian was going to go blind at a rapid rate. As it is, there are several different colors that Sebi cannot distinguish. He also suffers from night blindness.
Battens is a cruel disease in many respects. One is that it shares symptoms with other diseases and conditions. It masquerades itself as being something other than what it is until the truth is eventually found out. There was just too much going on with Sebastian and his symptoms did not match up with what those experience with normal epilepsy. As a result, his parents decided to have him tested genetically. The results of the testing would bring with it news that was devastating to this family. Sebastian had CLN8, a variant of Batten Disease. These are Christopher’s own words,
“Of course we were devastated to learn that Sebastian was properly diagnosed months later in late 2012 with Battens Disease and with the variant CLN8. What we learned was that everything that Sebastian had gone through up to this point of his life, now age 9, were symptoms of this horrific disease.”
Chris went on to say that at UCLA, Sebastian was seen by some of the top geneticists in the country. They did not sugar coat their words as the disease was explained to the Velona family. The plain truth was that Sebastian had a crippling neurological disease for which there is no cure. The family was told that their son would in all likelihood be gone by his late teens or early twenties. I can only imagine how they must have felt upon learning the news. Chris and Teri were told that they should make Sebastian’s life as amazing as possible for the time that he had left. Christopher shared more of his feelings in a simple statement, “This type of news puts things into perspective. We had lost many years with a improper diagnosis and felt cheated that our son was going to die well before he had a chance to live.”
In fact, that is often the case in finding the answers that these families seek. It seems that change is taking place through things like greater awareness but it is too slow in coming. I have heard of changes just in the time that I have been following Batten families and that is a great thing. In most all cases though, time is lost in determining what is really taking place in a child’s health. Perhaps it is because Battens is still considered to be a rare disease, but it really doesn’t seem to be that rare. Does it?
The action that was taken by Sebastian’s parents is so very similar to what I have heard from other families. Being faced with the news that Sebastian has Batten Disease must have left them stunned. Christopher would say that they attempted to keep Sebastian’s life as normal as they possibly could. Sebastian stayed in school, attending special education classes. Fortunately, the school system in their home city of Santa Clarita is very accommodating. In fact, Chris would tell me that the people that work, with special needs kids, at Sebastian’s school are amazing. Maintaining a sense of normalcy is important.
Like a lot of parents that are faced with the type of thing the Velona’s would encounter in Sebastian, they would decide to take action in the fight against Batten Disease. Especially when it comes to battling the variant that their son has. This however would have to happen as individuals and not as a couple. You remember what I have said in a number of my blogs in regards to couples and what sometimes happens in marriages. Life happens! Sometimes marriages do not survive the stresses that life can bring. I asked the question earlier, can the impact of having a special needs son or daughter affect a marriage? What if a child has a terminal disease? The answer is that yes, it can often have that kind of an affect on a relationship. All it took was a simple Google search and there were several articles that came up. They validated that answer as being yes, it certainly can. For whatever reason, whether finances or otherwise, it happens. The stresses that can come from having a child with special needs can add to others that already exist.
For Christopher and Teresa, life happened and they each went their separate ways while remaining friends. Teri is now happily remarried. While this particular story is a collaborative effort between Chris and myself, It needs to be said, that Sebastian’s mom Teri is a fabulous mother to him. She not only shares the custody of Sebastian, but also the passion that Chris has for spreading awareness and finding a cure for her son. This is testified to by her own activity on social media and her efforts that are aimed at increasing funding for a cure to CLN8. Two people that have gone their seperate ways can always still work for a common goal. In this case, the goal is helping their rock star son and others that are like him! Both of Sebastian’s parents are very actively involved in his life and their shared love for him is readily apparent!
Chris co-founded the company Sequoia CBD and he works from home. This allows him to work for the benefit of others, while spending a greater amount of time with Sebastian. CBDs are marijuana extracts that can be used in the treatment of numerous diseases. The one in particular that I would want to highlight is, of course, epilepsy. It can also be used to treat seizures related to diseases like Battens. By my own admission, I have in the past been a little skeptical of this type of thing but I have really changed my mind. There have been cases where it is known that allowing the use of alternative medications for seizures in Batten children could have made a difference in the quality of their lives. In those cases, it was not legal in their particular state, but it should have been! That needs to change. I have a buddy, named Jeff, at work, whose wife Jenni suffers from epilepsy and also has issues with anxiety. The doctors had her on a number of different pharmaceuticals to treat these conditions. The side effects for her were just unreal and they created a situation that was unbearable for the family. Fortunately for us here in Oregon products derived from marijuana are legal like they are in California. Jenni now uses CBD oil for her epilepsy and THC for her anxiety. This was with her physician's blessing, and is achieving results. While we have Benjamin on standard pharmaceuticals for his seizure disorder, I am in favor of these alternatives. Christopher said that they used CBD with Sebastian from 2014 to 2015. He had this to say, “...he did really good on those. Cognitively, we were able to reduce around 15% of the pharmaceuticals due to the fact that the oils were working in his favor.” He went on to say that while using CBD didn’t necessarily reduce the number of seizures, cognitively he had a much more alert child.
Chris also created Project Sebastian. In the beginning, Project Sebastian was created by Chris to help parents with free medication alternatives. This took place during clinical trials using CBDs at a major university. Remember that Sebastian was initially diagnosed with Epilepsy. Chris has since curtailed his activities with Project Sebastian to helping to find a cure for Batten Disease. The change of direction, of course, took place after Sebastian received his diagnoses.
Chris is a handsome guy. Is he not ladies? He works out and takes care of himself. He is a confident individual that could be climbing the ladder of personal success, and it is my impression that he could accomplish just about anything he set his mind to. His goals however, are not self-centered. They are centered around helping his son and others that are afflicted with Batten Disease, as well as other diseases, like epilepsy. He is really serious about creating alternatives for people that suffer from the side effects that can come with the use pharmaceuticals.
In my conversations with Chris, I find that he is moved by news concerning other Batten families just as any of us that follow them would be. Perhaps more than us because he walks in their shoes. He wants a cure to this dreadful disease. Not only for Sebastian, but also for others that have Battens. If you go to his website for Project Sebastian you will see the following statement: “We have partnered up with the world’s leading researchers studying gene transfer approaches to pediatric orphan diseases. These groundbreaking and innovative approaches allow us and others a real chance at eradicating this disease. A first of its kind clinical trial has begun at Nationwide Children’s Hospital to evaluate this investigative treatment, providing hope for children with Batten disease all around the world. Helping others and sharing this info is a must!” How is he going to get this done?
Many, if not all, of my readers are aware of a non-profit organization called the Charlotte and Gwenyth Gray Foundation, or curebatten.org. The Gray’s story can be seen by going to their website or even by doing a google search. Gordon Gray is a Hollywood producer who had been handed an extra-ordinary challenge. For him and his wife Kristen, the news that both of their beautiful daughters had CLN6 Batten Disease, brought total devastation. Faced with this mountain of a problem, they took action. They sought out the help of researchers who had achieved results in laboratory trials. They then created their foundation in order to fund clinical trials that have thus far brought tremendous results. The Grays have an incredible ability to raise funds and have achieved much in that area. So far they have treated several children in clinical trials that bring REAL hope! By my own admission, I am not a big movie watcher and so I do not pay a lot of attention to the Hollywood scene. This is due in large part to the fact that it doesn’t meet my current lifestyle. I will tell you this. When it comes to the Gray family, I have them, and all those associated with their foundation, on a bit of a pedestal. This world needs more people like the Grays! They are like movie stars to me because of all they are doing. Wonderful people!
Christopher says that he had taken a tip from Teresa concerning the Gray family and acted on it. Chris Googled the Gray’s foundation and made a call. Two days later, he heard from Kristen and a lunch date was set up. Over lunch, they put together a plan to help Sebastian. Teri also has a non-profit set up to help her son. It is simply called the Sebastian Velona Foundation. So between all three of these organizations, work is being done to help Sebastian as well as other children with Batten Disease. Chris had this to say concerning the therapies that he learned about during that lunch date and the hope that he now has, “At this time I had no idea what this was or what it could do to help with many different neurological and physical ailments. I firmly believe that this will change the face of medicine and it will start with Sebastian.”
The Charlotte and Gwenyth Gray Foundation has given Project Sebastian and the Sebastian Velona Foundation access to the same team of doctors that are providing therapies to the other children. So whether funds are given to Project Sebastian or the Sebastian Velona Foundation, all funds will go to helping Sebastian receive what he will need to be treated successfully. This is truly amazing and ground breaking stuff!
Chris says that the Gray family has been instrumental in them pursuing treatment for Sebastian. It costs a sum that is in the low millions of dollars to treat each child and it is not covered by insurance. As a blended family Christopher and Teri work to raise these funds through their specific organizations. Chris had the following to say, “….monies need to be raised to put science to work and to do all of the proper testing which takes months to years to accomplish. We are very hopeful that we as a blended family can raise the money to help Sebastian and others. So we are doing what we can to get attention via newspapers or the TV and local fundraisers. But to be honest we really need national support if not worldwide support through other foundations and very wealthy businesses or individuals. I will not stop until we do find enough money to cure this disease for everybody.”
Unfortunately, what works for one variant of Batten Disease, does not work for another. The basis, though, of Gene Replacement and other therapies shows promise towards all of the variants. Hope is in the air. For all of the families that are facing Batten Disease, you have my heart completely. You obviously have Christopher’s too!
And how about our rock star Sebastian and the battle that he is facing personally? Chris admits that the challenges are great. Sebastian is affected by declines, physically and cognitively. He has issues behaviorally and then there are the seizures. It has been a while since Benjamin has had a grand-mal seizure. I can tell you that it is scary stuff to see your child shaking from a seizure. It creates a feeling of helplessness. Christopher’s comments about his son and what a warrior that he is really moved me as I read them. Especially what he said about the understanding Sebastian has for his own predicament.
“….Sebastian is a warrior! I know a lot of normal kids that do not have this kids type of will, drive and spirit just for life in general. Sebastian fully understands what is to happen to him if there is no cure and this, although it may worry him, has not changed him one bit. If anything it's made him a better human. He helps everyone that he can by hugging them or pushing other kids in their wheelchairs during class or just checking in with you to see if you're OK. He is a true kindred spirit. An old soul if you will. One of very far and few between.”
You have to understand what it is like for me personally to write these stories for this blog. I put the table of contents on the right hand side of the blog so that each story can be found. None of them will be lost and forgotten. The details of what each family goes through has effected me in a profound way. I have in the past had two or three families that tell me that they would be willing to work with me in putting their little warrior’s story in this blog. As I am finishing the last one, a couple more will show interest. I am in a sense, sorry that these stories exist. I so wish that Battens and other rare diseases did not happen to children and kids in their teens. I really want there to be a cure and one of my purposes for writing is to raise awareness. These stories are a little sad because they often have to do with the loss of a child. They are, however, meant to be a way to show my appreciation for what the families go through. They are also meant to be a way to celebrate a life, and the impact that it has had on all of us even though it is shortened by this wretched disease. The details of the undying love that is shown is to me unparalleled in beauty. Yes, Christopher Velona could be doing other things with his time. He is however, doing the right thing and the thing that is best for Sebastian. I have heard it said that to a kid the word love is spelled differently. Instead of L-O-V-E it is spelled T-I-M-E. Sebastian knows how much his parents love him.
Everytime I tell one of these stories, I try to capture the feelings that come with facing this type of a journey as a family. I do so because I want to provide the reader with that insight. I also ask those questions because I want to know the answers for myself. Most of the time, I am dealing with the information provided by moms. I get what I like to refer to as “Mamma feelings”. They are the best! The answers usually result in statements that are full of deep emotions. I usually ask questions that draw out what the person was feeling at the different stages leading up to the diagnoses, and what it is like to learn of the diagnoses that is so devastating? I have never hidden the fact that I get worked up personally when I think about the information I am given. I expected less emotion as I was interviewing Sebastian’s father but that was not to be the case. As the conversation went on, Christopher talked about the fact that he could lose Sebastian if a cure is not found. He was deeply moved by the fact that he could lose his son, and I was moved as well by his words. As a result, he spoke about his commitment to doing everything that he could do to find a cure all the while spending every minute that he can with Sebastian. It was so easy to see the depth of love that he has for his son. By the end, my reaction ended up being no different than when a mom is involved. The Pappa feelings ended up having the exact same effect on me!
I video chatted with Christopher on Facebook again briefly one evening so that I could get an answer to a question. I got to talk to Sebastian once more in the process. It is so easy to see what the big fuss is all about. I am from California originally and do not live far away. I might show up some day to get one of the hugs that Sebastian is famous for. It is really nice to know these two. I am behind them 100% in their push to find a cure and it has been a real pleasure to get to know them. Thanks Chris for all that you do and for your help with this story. It has been a pleasure and I wish you all the best. Get ‘er done for Sebastian!
Blogger and Advocate
Check out the following from Sebastian's Daddy!
"We recently did a podcast discussing my son’s rare neurological Gene disorder called Battens Disease, with one of my scientific community members, Dr. Jill Weimer from Children's Hospital in Ohio. This is the link to the Podcast. It was really great!"
“I would never look at things in the same way ever again. I had been made aware and I had met the one who was responsible for that taking place. She was beautiful and I would soon mourn along with all of those who followed her. This, as she passed into eternity just three months later. Why Batten Disease and these families? Why do I continue to hold them in such high regard, and why do I pay so much attention to this one childhood disease? My perspective in life had changed once I was made aware, and these precious Batten warriors have become much of my focus.”
Taken from the blog titled “Lasting Impressions”
I know that everybody can look back in their lives and see how a chain of events has taken place and often times has brought about positive change. Sometimes those events can also be negative occurrences. Either way, we are changed in one way or the other. Why this blog and my love for writing got started comes from a series of events that have been overall, very positive for me. Do you like details? I can remember one time being in my boss’ office trying to explain something. You see I have problems getting straight to the point. As I was talking to him he was motioning to me with his hands. You know, like what people do when they want to get one with it. He was being kind of rude, wasn’t he? Well it has taken me a while, but I have figured out that I use a lot of words because I like details and giving people context. So here we go!
We were at a mall one weekend and we were walking by a bookstore. I noticed a book titled SEAL of God that was written by a former Navy SEAL named Chad Williams. I was thinking that the book sounded interesting and I have a lot of respect for Navy SEALs as I am a former Navy guy. I bought it and brought it home. I devoured the book in a weekend and it left me wanting more. A little later we were at our local superstore and I noticed that Marcus Luttrell’s book called Lone Survivor was for sale. This looked interesting as well, so I brought that one home. I read it non-stop as time allowed. What an incredible story! I was definitely hooked on these stories about our military’s Special Operations community at that point. What amazing people they are. I needed more! Later, we were at Benjamin’s favorite mall and in his favorite bookstore on a Sunday and I went to the section that had military books. I scanned the shelf and and saw several books that interested me. One of the books was named FEARLESS. It was about a Navy SEAL that was killed in action in Afghanistan. His name is Adam Brown and he is from Hot Springs, Arkansas here in the USA. It seemed that he had to overcome a lot of problems to even get into the SEALs. Well at the time, I thought that I really wanted to read a book about someone who had returned from battle victoriously. And I really didn’t want to read about someone else’s problems. So I put FEARLESS back on the shelf. It is possible that I may have never picked it up ever again. I may have never read Adam’s story!
My reading continued and it got to the point that I thought that I should purchase a Kindle to keep the cost down, wink wink! Actually, I just wanted one and so I put it on order. I read a couple of other books and thought that I would give FEARLESS a try at that time. I loaded the book on my Kindle and began to read. From the very first few sentences I was gripped by this book. I could not believe what I was reading. How could someone overcome so much and achieve what he did in the military. It is still to this day, the most incredible life story that I have ever read about. Upon finishing the book I sat at my computer wondering how I could go about getting ahold of his family to thank them for telling his story. I would get my chance to do just that.
Now I am a pretty passionate person. What do I mean by that? By that I mean that I have to be passionate about something in order to get moving on it. Otherwise, it ain’t happening. Once the passion is ignited I become almost obsessed with it! Um, actually, I do get obsessed with it. I am also given to extremes sometimes. I go overboard! I give it everything I have! As a result, I would end up traveling to Hot Springs in order to honor this Navy SEAL who gave his life in the name of freedom. I went twice. The first time was with Benjamin and Rosie. I took diving lessons in order to see an underwater memorial dedicated to Adam. The memorial is fittingly named Fearless Rock. On the second trip I had the honor of meeting Adam’s family. If you look in the April and May archives for 2016, I have written in detail about the entire experience.
In this case, there is a little more to the story. It was through a chain of Facebook pages leading from this Navy SEAL that led me to a little girl that had a horrific disease. It is fatal and there is no cure for it. It is called Batten Disease. This little girl’s name is Ali (sounds like alley) and she was from Hot Springs as well. Many of you know the story. It was on the first visit to Hot Springs that we met Ali and her family. The entire experience of following her journey changed me forever. The details related to meeting this angel are contained in the blogs in the February of 2017 archives. Up to that point all my activities on Facebook had been completely random and sometimes politically angry. After having become aware of Batten Disease, my dealings with social media changed completely. Through a series of circumstances I eventually branched out and started following other Batten families. My blogging, which had began with one blog about my son and then the whole FEARLESS experience, now became focused on these families.
What is it about the the journey that comes from having a child with Battens that I find so moving? You know what? I am probably one of the most emotional guys that you are ever going to meet. I see nothing wrong with being a sensitive soul. I work in the aviation field in order to feed my family. There are lots of alpha type males around in my world but I am a little different. I can be aggressive and competitive when I need to be but I have no issues with being sensitive in nature. In my mind, it is the sensitive and passionate types that get things done FOR OTHERS. It is for the “others” that this blog has come to exist. It was started to detail my own experiences, but it has become so much more. So again, what is it about the Batten Journey. In my last blog I wrote the following:
“I mean, what is it like to be told that your child has a disease that is fatal and for which there is no cure, no treatment? The way that you all care for your kids through all the stages that can be so devastating. Yes, in some cases, there is room for optimism but change is too slow in coming. Upon being given the news of the diagnoses you are completely devastated. You then pick yourselves up and begin to provide your child the best possible care. You provide them with everything that is needed to make their lives as normal as possible and you make sure that they experience everything that makes life worth living. You are there with them, every step along the way. Undying love is demonstrated through your actions. Throughout the journey, and as the difficulty increases, you take whatever action is necessary. The respect and admiration that I have for you grows with each story that I am allowed to tell. I get drawn into the details and I do the best that I can to feel what you feel.” And in fact, the love and respect that I have for those who make up the Batten community has grown exponentially.
Is this to say that families that have a Batten child are the only ones that have to endure a difficult journey? No, not at all. However, they are a really good example of the type that shows undying and sacrificial love to their children. All of you that are going through this kind of thing are not trying to achieve the rockstar status that I tend to give you. You just wanted a family. I can’t help but to put you on a bit of a pedestal. I am the parent of a special needs child who is now an adult. I understand some of what you have been through but I cannot know in detail all that you have or will experience. Only you, as a community, can understand completely. As for me, I will use this opportunity to honor you for all that you go through. Most importantly, I am doing this to spread awareness and to honor these children. More than anything, these blogs belong to them. I want people to know who these precious children and young adults are. Will I always blog only about Batten Families? Time will tell. I will always have a special appreciation and love for the Batten community. I swear that I love these kids! I will always be willing and ready to make additions to the list of families whose stories are told in this blog. Do you know that I have actually been told by more than one person that I should write a book. What a great compliment that is to me. How would you feel as Batten families if I was to do so? I have had guys at work tell me that I should put ads up in the blog in order to make money. You know, I would never want to use the difficult circumstances of others to turn a profit. What if the proceeds went to research and the support of families though? Something to think about. Your opinion is important to me!
The domain name for the blog was originally gregster60.com. Why the name gregster60? Wow, couldn’t I have come up with something better than that? I am not really cool enough to be calling myself the Gregster. I am just a regular guy with a regular job. I was born in 1960 and thus the name. How clever huh? Not really. I actually wanted to call it BenjaminsDaddy Dot Com. I asked a couple of people and they thought that was perhaps too long of a domain name. I thought to myself, well what am I going to call this thing. I can be creative at times but this wasn’t one of them. I ran the gregster60 thing past my wife and she liked it. I went with it and so there we were. Since that time, I decided to change the domain name. This, in order to better reflect the purpose for it's existence. And so, www.rareblogger.com is the name I chose and that is where you can now find these stories. Not a single one was lost in the shuffle! I do like like the new domain name. Don't you? It is a pretty rare type of blog. Is it not?
Being Benjamin's Daddy is a status to me. He is a special guy and it is special to be his dad! I have always loved him but my love for him has been enhanced by my activities on Facebook and my blogging about all these special families. I am known as being Benjamin’s Daddy even if the blog is not named after him. There are a lot of families that follow Batten children that also appreciate my posts about my son. He is such a handsome guy in his own right. He gets his looks from his mom. I call them “My Two Faces” because they look so much alike. I never try to say that being a parent to a special needs child is like having a son or daughter with Batten Disease. I only try to relate our experience to theirs in the ways that I can. The trials of a Batten family will always be so much more difficult. I do have two other sons that I am equally proud of. Daniel and Kenny both live out of state and both are successful in their own way! Love you guys!
My sweet wife, Rosemarie has been very supportive of me. She has read every single blog post and she helps me with grammar and spelling. As I am writing each story, I bounce ideas off of her about the blog. I will read her sections as I write to see what she thinks. My mind is always moving when it comes to writing this blog. Anytime that I am performing mundane and repetitive tasks at work, or I am at break or lunch, the old brain is thinking about the details of a story. When I get home at night, I don’t talk to her about what I worked on. How boring is that. I talk to her about what my thoughts are on the blog. I bounce ideas off of her to see what she thinks. We are a team. There are others whose opinions I will seek. Rosemarie, though, is my main confidant and help in writing. I am so thankful for her and the years that we have been together. She is better than I deserve sometimes.
Where would my blog be without Facebook? Everytime I do a new post, Weebly gives you the option to share on Facebook and Twitter. I have yet to get a Twitter account but I share the blogs on Facebook routinely. That is, after all, how I connect with Batten families. For that matter, that is how they most often connect with one another. Like most all of the others that follow Batten families, I try to give encouragement to them through comments on their posts. I have grown to love Batten families and it should not be any wonder. After all, that is what I have started to write about the most. I do my best to meet as many families as I can and to communicate my feelings towards them. I love the little warriors who battle Batten Disease. They inspire me to write. It is because of them that I have discovered that I do love to write. I have for the most part, quit hitting the like button on pictures of kids with Batten Disease. I now almost always hit the love heart button. I can’t help it. It is just the way I feel and if I do it for one child why shouldn’t I do it for the others. I hope that you don’t mind! You know what else? I have grown to love a lot of people through my involvement. Now, would we all get along perfectly if we lived close by? I would hope so but maybe not. The thing I like is that I have a group of people on social media that appreciate my son and they love the work that I do on their behalf. I have received a lot of support from the Batten community at this point and it is so appreciated! I really mean that!
As I said earlier, there came a time when I felt that branching out and meeting more Batten families was a good idea. I am so glad that I did! This has all literally changed my life for the better. I am unafraid when it comes to doing these stories. It is hard to put into words but being known as a friend of the Batten community is a big deal to me. I have heard people make comments like, “He is writing about us", and you know what? I am writing about families that battle Battens. I am not doing this to make a profit. Like I said earlier, if I ever was to gain monetarily from this, it would only be right to put it back into the community. This takes a lot of my free time away but it is better than sitting in front of the television all the time. I do it for the love of writing and for the love of the Batten community. It is my way of giving back. Following these families has enriched my life.
When it comes to the blog and the direction that it has taken, I owe much to our friend Sandy Lee Garrett. She is the one that told me that I should reach out to and blog about these families. My friendship on Facebook with many of the key families in this blog at the beginning came from me learning of them from Sandy. For example, I would have never learned about Ollie’s Army except through Sandy. I would not know who Dixie Bergeron and her handsome warrior son Jacoby are. I would not know about Elsie Clark and her grandson Marshall (NO Ordinary Love would never have been written)! Sandy first got her start following little Casen from Casen’s Crusade. Read the blog titled “The Caring Type”. Sandy lives in New Zealand and she traveled from halfway around the world to meet Casen. It is a beautiful story, as is Casen’s life! People often come into our lives for a reason. Sandy had a big part in giving me direction early on and things have just taken off from there. I will always be grateful to her for her contribution!
So as I have said, I have a love for writing and I hope that it shows. The feedback on this blog has been overall very positive. The stories have changed as my ability to tell them has matured. I was extremely happy with the way that my last blog came out. I couldn’t have done it without the help of Montanna’s mom Jennifer and her grandmother Joan Avery. I was chatting with Joan after the blog was complete and the day was done. I told her that I was very happy with the way that it came out and with the number of people that looked at it. She said that I had done a good job for their girl and then she just said “I hate Batten Disease”. Upon seeing that in my chat window I just got this sinking feeling as her words brought it all home. I mean I love honoring these kids and you families in this way but we are talking about a terminal illness. I need to always make sure that my motives for doing what I do are correct and for the benefits of others. It's not about me!
When I first started writing these blogs, I would take notes during the week and then pound out a story in a day or two. Things have changed. I now take at least a two week minimum to write each story. The amount of detail has increased. I used to assume some things and kind of “wing it”, if you will. Now what I do is ask the family for a summary of their experience. A timeline of their child’s life. Then I ask questions that help me get details and emotions that I do not yet have. It is always done over messenger or email in most cases. When they are thoroughly tired of hearing from me, then I have what I need. So as you look at the stories in the blog, I think you will see the changes from one story to the next. They are all precious because they are about these darling children. It is just that the later ones have more detail. They all carry deep emotions. I have a personal test. If it gets my emotions stirred up then I know that will be the case for my readers. Trust me, they all have passed the test. I can’t tell you the number of times that I will be off in thought land and will start to think about the latest blog. Often times my eyes will start to tear up in the shop and I will have to regain my composure before I am found out.
As I have already stated, being involved in the Batten community and having a way to contribute is important to me. That is really the core of why I am doing this. Although I am not just doing this to be well thought of, I do like knowing that my efforts are appreciated by the families. There are no Batten families that are less significant to me but there are some families that I have had a greater amount of contact with. Sometimes, it is something simple like responding to a post that I have done with a warm thank you! Sometimes it may come in the form of a larger comment about a blog from the family that I did the story about. The number of stories that I have done has increased to the point that I can’t mention all of them in this particular blog post. Each story is precious to me. I have the upmost respect for any of the families that takes a journey like Batten Disease. There are a few people that I would like to mention at this time.
Mike Carroll and Lucy Faith to me are an amazing couple. I take it that both are college educated and together they had a definite plan as they started a family. I did a blog called My Kind of Royalty in which I talked about them. In that blog I compared this couple to the ones that had been showcased by the Royal Family. You see Mike and Lucy live in England. I made it a point to tell people that these other couples had nothing on Mike and Lucy appearance wise and I truly believe that. When two nice looking people have a family they generally produce nice looking children and you know what? They have. All three of their boys are quite handsome, and little Amelia? Well she almost takes your breath away. Their dreams would begin to become reality as they worked on building their family and life together. As would happen though, their darling little 3rd born son Ollie would be diagnosed with CLN2, Batten Disease. This alone would leave any family devastated, but that would not be all that they would face. Right around little Amelia’s 2nd Birthday she would also be diagnosed as having the same disease. Crushed and in disbelief, it would be so easy for any family faced with this type of thing to just bury their head in the hands and say “Why us” Instead, what did they do? They created an army. Through Ollie’s Army they raise awareness while keeping us informed about the progress of Ollie and Amelia as they undergo Enzyme Replacement Therapy for CLN2. There is no doubt that they are extremely busy people. They are heavily involved in fundraising and also help others in the Batten community in any way that they can. That is the way they chose to deal with the devastating circumstances that they found themselves in. They have met with Rockstars and Royalty and yet they remain totally accessible and easy going. Yep! They are my kind of Royalty! I cannot begin to tell you the amount of respect and admiration that I have for this family! I am so happy to be following them from a distance while watching all that they do for the Batten community in England and beyond.
Christina Bouraimi, from the country of Greece, is one of my most amazing friends and co-advocates. I am sure that most, if not all of you know that her son Theodore has CLN3, or Juvenile Batten Disease. She had posted a picture of her and Theodore standing face to face. The picture was meant to show us a portrait of the love that exists between the two of them. Well her message came through loud and clear to me. I was immediately inspired to blog about them and so I contacted her. We did not really know each other that well at the time. When I received the material for the blog from Christina, I couldn’t believe how skilled she was at telling her story in a poetic form. I was thinking to myself that there was no way that I could re-write or take credit for what she had sent me. So what I did was to check the grammar and place that portion right in the middle of the blog. I used her information to write the beginning and the end of the blog and it turned out well, to both of our satisfaction. I actually wrote the intro to the blog on my cell phone while getting my tires worked on at the tire shop lol. These blogs, for the most part, are seen only as much as they are shared. Christina is a tremendous advocate for her son and also for all kids with Batten Disease. She is very active on social media and in cyberland in general. She has literally shared the Face to Face blog with thousands of people worldwide and it has even been translated into another language. I can remember doing a Google search for gregster60.com and had Christina’s name come up. You know what? I am okay with that! It is so nice to know you and your wonderful family Christina! I SO appreciate all the support that you are to me.
I wouldn’t know who Elsie Clark and her grandson Marshall are if it were not for my friend Sandy. I am so glad that she told me about you Elsie. No Ordinary Love is the blog that I did about Elsie’s love for her grandson and it is maybe the most beautiful story of them all. Elsie said that she is “just an ordinary Nana” but I wasn’t having any of that! Trained as a nurse in the type of medicine that was needed for a Batten child’s journey, Elsie would drop everything for her most handsome guy who was more like a son to her. The story also includes the fact that Marshall’s mum Lara Clark gave up the care of Marshall to her own mother Elsie. That in itself is beautiful. It is not that Lara wasn’t there, it is just that she did what was best for Marshall. Elsie left her profession as a nurse and fought for Marshall as they weaved their way together through a medical system that was not designed to handle his care. Elsie clung to Marshall in the most loving and profound way. The whole thing often brings tears to my eyes when I think about it. That story is in the April archives for 2017. Another person that was very special to Marshall, but who was not included in the story, is his Uncle Andrew. Andrew did something special for Elsie when he had the blog about Marshall turned into a book for her. To Elsie, it is a tremendous keepsake and that is special to me. The love that exists between the two of them is a tremendous example of what takes place between a Batten child and their caregivers. These kids have a power over us and that is why I blog about them. Elsie and Marshall are both angels. One is in heaven and one is still here on earth. And Elsie, you will never be an ordinary Nana!
One lady whose story is not yet in this blog is Shannon Mason. She does not have a child with Batten Disease. Shannon’s son, Vince, contracted Herpes Encephalitis of the brain when he was only two years old. He will be 16 years old this month! Shannon shared with me that her son was not supposed to make it this far but he continues to battle on! He is such a warrior! How do I know Shannon? You know at one point I had just sent her a friend’s request on Facebook because her name came up. I did not know it at the time but she was close friends with one of the Batten moms, whose name is Wendy Weaver. Wendy is an awesome person with this son named Austin. Austin has Batten Disease but that hasn’t kept him from smiling. Austin smiles. In fact, that is the title of Austin and Wendy’s story that I did in September. Austin Smiles is what I called it. Another very wonderful story. Shannon had read one of my blogs a while back and made a comment about it. This is what she said, “All we can do is to show these kids our undying love.” You have to know that a comment like this will never go unnoticed by me. In fact I have used the words “undying love” several times now in this blog and it will continue to be used over and over again. Shannon is a beautiful example of someone who shows undying love to her child, as is her friend Wendy. Both of you ladies are amazing to me! Thank you so much for your examples.
Kadriye Hacioglu is my friend. She lives in the country of Turkey and she is someone that I greatly respect. Kadriye has been a constant source of encouragement and is a real cheerleader to me. She has not dealt with Batten Disease only once, but twice with both of her beautiful daughters. One is in heaven and the other is still here on earth. In fact Cemrenur, her elder daughter, is the oldest living child with her particular variant of Batten Disease. In her early 20s now, Cemrenur is a warrior princess of the rarest kind. She continues to battle on with the assistance of a machine that helps her to breath. Together her and her mom are a tremendous picture of tender, undying love. Cemrenur is Kadriye’s world and together with the help of Kadriye’s mother they provide constant around the clock care. Why? Because Cemrenur is so deserving of every bit of attention that she receives. She is beautiful! It wasn’t that long ago that I did a post on Facebook telling people about my desire to blog about them and their children. I received a very good response from it and that was so appreciated. I had often wanted to have Kadriye’s story in the blog but I was afraid to approach her because of the language barrier. I didn’t want to call anyone a bad word and end up offending them. Well Kadriye messaged me when she read that post and told me that I could do her story. It was kind of cute because it was like she was waving to me and saying “Hey Greg, I’m over here! Please tell my story!” It went very well and together we got it done. It is called A Rare Kind of Devotion. My friend from work, Jeff, told me about Google Translate. What an awesome thing that has turned out to be. I used it for Kadriye’s blog and more. I have used it to translate other blogs so that they also could be shared by Kadriye. I have used it to communicate in French and Polish as well. Pretty cool stuff for a regular guy like me. So Kadriye is a special friend and one that is highly valued by me and so many others. She is a constant source of encouragement and I am so happy to have her on board.
There are so many others that I would like to mention but don’t have the space for in this blog entry. I had recently sent a friend’s request to a young mother named Brittany Gaudet who is from Newfoundland. She has recently lost her beautiful five year old daughter Ava to Batten Disease. I had previously done a story that I titled Little John and The Reason. In most all cases, parents with kids that start to show symptoms of the disease go on an endless search for answers. When Little John started to show the symptoms his mom, Natalie, automatically thought to have him checked for Battens. She did so because there were other kids in the family that had the disease at one time or another. I was looking at Brittany’s page one day and noticed that she lived in the same place as Little John’s mother, Natalie. I came to find out that little Ava is actually John’s cousin. I guess the thing that is significant in telling you this is that Ava is part of little John’s story and I didn’t even know that at the time that I had written it. We need a cure to Batten Disease.
There are so many other names that are in this blog that I haven’t mentioned. I would encourage all that are interested to read through as time allows. There are none that are less important to me. All these stories are precious and priceless.
Not all families will say yes when approached by me. The reasons can be various but will always be understood. Some people want things kept private. Some want their story told by a different means. Whatever the reason I honor the right of Batten families to do what they feel is best for themselves. I always say that I am doing this for all of you. It is not for my own benefit although I am benefitting from being involved. I am not doing this for notoriety although I like the fact that my efforts are being noticed by others. I also would like you to know that I always just work with the material that I am provided. I do my best to not interject my own beliefs and opinions. My desire is just to tell the story while providing background, and sometimes it’s my own. I know from talking to some of the families that people are starting to notice and that they know about this blog.
There is another thing that I would like to tell you before closing. It will always be my goal to keep all negative details out of these stories. I have used words like honor and appreciate more than once in this blog post because those words are both key to what my purpose is in life. When it comes to things like divorce and problems in a family, I try to avoid those details as much as possible. I use phrases like “life happens” because things happen. We all, including myself, have skeletons in our closet. I don’t want you looking at mine and I will do my best to not mention yours. LIFE HAPPENS. Where it is necessary to mention details like a divorce, I do it just like I said. Life happens…
In a couple of cases it may have sounded as though a parent was absent when in fact that was not the case. This is because the grandparent was the primary caregiver at that point in the Batten child’s life and they had furnished me with the information. It is never my purpose to offend anyone.
My feelings are genuine. I really do care. My purpose for writing these stories is for spreading awareness through my new found love for writing. I also want to use my writing to honor all of you and to let you know that neither you, nor your children, will ever be forgotten by me. This blog is not meant to be a glorified obituary. Many whose stories I will write continue to fight. There is hope in the air as you continue to battle. In the cases where your son or daughter has gained their wings, the blog is meant to be a celebration of their little lives. By the time they have left this planet, they will have impacted people’s lives like none other and that same impact will continue to be felt. Unless my life changes and I am no longer able, I want to continue this effort. Will you allow me to do so? I hope so! Moving forward, I will do my best to identify those who would like to have their stories in gregster60. But if I am for some reason not identifying who you are, do what my friend Kadriye did. Wave and say, HEY Greg, I’m over here!
Thanks for listening. You have NO idea how important you are to me!
Blogger and Advocate
PostScript - So here it is April of 2019 and I decided to make a few more changes to "The Blog About My Blog". More than an entire year has gone by and many stories have been added to the blog. I am thankful for every family that has participated and I am forever grateful for being allowed to be involved in the Batten community. These are ordinary people that have been asked to do something that is extraordinary. In the promise, they have become completely amazing to those of us that are on the outside looking in. Writing these stories is a challenge for me in several ways but it has been well worth the effort. My life has been changed by the entire experience and the love that I have for the little warriors that battle Batten Disease has grown exponentially. I will always be indebted to the people that helped get this whole thing started and for that reason, they will always be dear to me. I have a feeling that I am not finished yet and I will continue to write for as long as I am able. I am not finished! Thanks again for your interest in that which has become so important to me!
Please take the time to join me on my group Facebook page. It's named:
Benjamin's Daddy @ rareblogger.com
Thank you SO much!
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017