“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!"
Highlighting a previous blog that might interest you:
Journey Unexpected - The Rich Family
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the pieces and will yourself to do your very best. A love that is profound and a bond that is stronger than any other is formed. Two little beauties in one family is two, too many but you seek to make a difference! A journey unexpected...