“This child, even though he was not able to see, nor walk or talk or even eat by mouth. He could not even sit up and he required total care at this point but still, he had this glow, smile and laugh that was unlike any I had ever known. He was happy and so brave. These children even with this debilitating and terminal disease that brings daily obstacles and continuous setbacks . They are heroes, superheroes, and MY heroes. They take what comes and they keep fighting and never give up and all the while maintaining this surreal strength unlike anything I've ever seen. Their families are together strong, and with what they have to come to terms with, knowing the final outcome. A life forever changed”
Kristy Thetford Prince
The image is etched in my memory and it will forever be there. I had followed my Batten princess in her journey and I knew from what I was seeing that she had taken a turn for the worst. The post on social media told the story. This created in me a sense of urgency which caused me to develop a plan. I had to meet her and it needed to be soon. As a family, we had never traveled away from the west coast but we were going to make it happen. This warrior princess made me aware but only because she shared a hero type status with another hometown hero. It was through following the legacy of a fallen Navy SEAL and a memorial created in his dedication that I had first found her. We would make the trip which would include me diving this memorial. Did I forget to mention that it is under water? I had to take diving lessons and at the time, we were in the process of selling a house. There were many things that had to fall into place and everything would come together. We told my son Benjamin, who has special needs, that he was going on the bus with wings. He did so well. The entire trip was magical and my life had been changed by the experience. This all left a lasting impression on me.
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. There are many other rare diseases that affect children and also many forms of pediatric cancer. I believe that, in many ways, the families that battle Battens represent all of the others very well. The sacrifices and the hardships are a common theme in the lives of all of those who have a sick child and the challenges on an emotional level are difficult. Often times, we wished that we could take their place as they battle. It just seems so unfair that someone possessing childlike innocence would face something like Batten Disease. As I have continued to write these stories, my appreciation for what these families face together has intensified. Often times, I will use my own experience as the parent to a special needs adult to try to relate. I am always very careful to point out the fact that my experiences pales in comparison to what is faced by these families. They have my profound respect and appreciation. I find Batten Disease to be an especially brutal disease and people need to know that it exists. They also need to know what these families go through and I try to accomplish this through what I write.
My writing came out of the experience of following my personal Batten princess’ journey and also the legacy of this Navy SEAL. At one point, I had decided that it was time to start connecting with other Batten families as I followed their children’s journeys. My friend Sandy had recommended that I start blogging about these little warriors and it was some of the best advice I have ever been given. My love for these children has grown with each additional story that I have done and my connection to the Batten community has become an integral part of my existence. I love being of assistance to these families in any way that I can be and it is a privilege to be involved. One of the things that I had taken notice of as I followed more families is the Batten conference that is put on yearly by the Batten Disease Support and Research Association (BDSRA).
I thought about how much I would love to go to one of these but at the time it seemed off limits to me. After all, we are not a Batten family. Attending one of these events seemed to be something that was only available through a right of passage. On one hand, I was happy that such an event existed for the families, but on the other hand, I was a little envious from not being able to attend. What would it be like for you? By that I mean, what if you were passionate about telling these stories and had done several up to this point in time? Would you not want to be in attendance and would you not want to meet the people that you have written about? To meet all of those beautiful kids, all in one place would certainly be a chance of a lifetime. This is why I am so thankful for my friend Alicia Headrick. Almost everyone that is involved in the Batten community should know who Ally is at this point. She has one of the most beautiful little girls and her name is Lydia. Princess Lydia has CLN2 Batten Disease and her story is one of the ones that I was privileged to be able tell in my blog. I titled the story, “Lydia, I Love You”. Alicia is a very bright and articulate young lady and she more than provided me with the right amount of material for getting the job done. We worked together and I think that the story turned out very well.
As this years conference was approaching, Ally contacted me and told me that I should attend. My response was as I have already stated. I am not a part of the Batten community and do not really have a right to be there. She remained persistent, letting me know that people other than members of Batten families would be in attendance. At the time, I had been visiting my dad and I was talking this over with my son’s girlfriend. She also encouraged me to check into it. After returning home, I contacted BDSRA through the conference page and I was simply told that I was welcome to attend. I had learned a while back that people at the organization read my blog and I was happy to know this. Apparently, word travels and my name was familiar to them. To date, there has not been many things that have been more fulfilling to me than working as an advocate on behalf of these families. I wanted to go to the conference to meet the people that I have grown to care about. I wanted to observe what takes place and I wanted to learn more about the Batten community. Most of all, I wanted to be in the presence of all of these precious warriors. Remember, I had traveled a great distance to meet just one. Of course, she was very special!
Life has become very busy for me. On top of my work in the aviation field, there are all of the normal responsibilities of a husband and father of a special needs adult. On top of this, writing has become my passion and my number one spare time activity. I tell you this so that you know that the time passed very quickly between making the reservations and flying to the conference. Before I knew it, it was time to meet some familiar faces in person. As with any new experience, there is a certain amount of tension involved. You think to yourself, how will I fit in? Will I feel welcomed here? It was up to me to make a positive impression on the people I would meet. From the very beginning, those faces that were familiar to me started to appear. The first familiar warrior that I spotted was Sir Dante’ with his mom Marlo Schinell. I didn’t hesitate to say hello. Marlo had told me in the past that her son was a real teddy bear. I could tell from the very beginning that this was true. What a completely special guy he is. I looked for Dixie Bergeron and her son Jacoby and found them. I spotted Crystal Alger, who’s grandson Seth (Seth and The Healing) is in heaven, and I said hello! Pamela Cameron of Casen’s Crusade is someone who was a big help to me in the beginning and I wanted to find her. I had written a story at one point called “The Caring Type” and it was about Pamela’s grandson Casen. Casen was the most charming little man that you might come across and he is now the most charming heavenly angel, I am sure! It didn’t take long for me to find Pamela and to say hello. I would go on to spend a lot of time with her and Crystal out front with many of the others. I learned a lot by just listening.
What I observed from the very start is that which I knew to be the truth. There is a bond that exists between these families that is rarely duplicated. This, to me, is completely understandable. After all, who out there in the general public can say that they have faced the same set of circumstances? Who has walked in a similar pair of shoes? Batten families understand each other’s plight like not many others can.These families, also, all share in common the same commitment to their children. Undying love in action. They have dealt with the same emotions as they watch their children battle. The whole thing resembled a family reunion and in fact, it was that. One thing that you learn in life is that being a family does not always happen by sharing the same bloodline. I wanted to see all of this for myself and that is a big reason for my wanting to be there. It was everything that I expected it to be and more.
As I have already stated, I had followed many of these families through social media and it was such a pleasure to meet a lot of them in person. There were, however, so many that I either didn’t know or had not followed as closely as I would have liked to prior to being there. Batten Disease really isn’t that rare, is it? I wanted to meet more people in the community so I did the only thing that I could. I mingled as best as a shy person like myself can. I met some new people and others that I should have known. Well that’s the funny thing. I have gotten into the bad habit of “accumulating” names on my friends list without getting to really know people. My mistake. As I was mingling, I saw a family who had a handsome young guy with them and I walked up to introduce myself. They were very friendly and we began to talk. I checked a few minutes into the conversation to see if I could find them on Facebook. As it turns out, they were already on my friends list. I am talking about Mike and Leah Brochu. Their son’s name is Neil. What an extremely nice couple they are! And Neil? He was amazing. You see Neil loves to hug, and not just a little. You just mention the word hug and the guy throws his arms open. He is absolutely the best hugger that I have ever met and he is such a sweet kid. The Brochu family is special and I am so glad that we had a chance to meet. We were able to chat on a couple of different occasions and it was an absolute pleasure. I made sure to get a hug from Neil ever chance that I was able to, and I am glad that I did.
As I had previously mentioned, I have Ally Headrick to thank for encouraging me to attend the conference this year and her having done so is very much appreciated. I knew in advance that she would be attending with her parents, Wayne and Lisa Headrick. I first saw them by the check-in window and Ally said, “Hello, we are the Headrick family.” I was like oh goodness, I know who you are, lol. I really enjoyed talking with all of them at the reception that first night. Ally’s dad is a working guy like me and we enjoyed talking shop a little. Wayne has just been treated successfully for cancer and that is something that we also have in common. Only in my case, my battle happened many years ago. Lisa was, of course, very nice and you can sure tell that she loves her princess Lydia. We had chatted many times over Instant Messaging and it was so nice to meet her in person. I really enjoyed the chats that me and Alicia were able to have out front and all I can say is this. Everything that I had felt about her as a person was found to be true. She has been through a lot as she has helped little Lydia to battle Batten Disease. In the process, she has shown great courage and determination to do the best that she can for her daughter. Yet another amazing person and mom, and I am so happy that we got to meet in person. There are so many others and one is someone that I knew very little about until the weekend of the conference. I would leave knowing so much more about her and her dear family.
I was walking through the hallway near the conference rooms and I looked off to the side where I saw a smiling face. I said something like, Amanda? It was Amanda Lay who was yet another friend that I had met online. She has two beautiful daughters and both have CLN3 Batten Disease. What a challenge this must be. We had chatted briefly a couple of times online but not really much more than that. I had no idea at the time, but I would leave the conference completely impressed with this lady. She was there at the conference with her mom Dessie Lowe, her very significant other Jerry Newport, and of course, her two daughters Abby and Shayla. Me and Jerry hit it off right away as we are both former Navy men. Jerry, in fact, served in the Gulf war and that type of thing always impresses me. What really impresses me is that Jerry has taken on the role of father to Abby and Shayla. Both of these girls could be a necessary inconvenience to some, but not to Jerry. He loves both of them to the moon and back, and I can’t say that I blame him for that. Both, are very special! I really didn’t have that much exposure to Shayla as she was occupied elsewhere but I spent time being around Abby on a couple of occasions. There is no way that pictures could do her justice. She is extremely special. Watching the interaction between Amanda and Abby was amazing. Even though Abby’s ability to express herself is limited, she was able to communicate in a way that doesn’t require a lot of words. The love that exists between this mom and daughter was a sight to see. This all left a big impression on me. One that is lasting. I am sure that Amanda’s mom, Dessie, is the anchor for the family in many ways. At least, that was my impression. She is a really neat gal. Like mother, like daughter!
And speaking of really neat gals, I didn’t even know that she was paying attention. I had made an announcement on my Benjamin’s Daddy Facebook page stating that I was planning on attending this year’s conference (I had nothing better to do, lol). Anyhow, I received the nicest response in the comments from Bobbie Lewis (Riddle). She has one of the most beautiful little persons for a daughter and her daughter’s name is Tayla. Tayla has CLN2 Late Infantile Batten Disease. I have no way of knowing who reads these stories unless I am told. Come to find out, Bobbie has been reading the blog on a regular basis and she has been very supportive of my efforts. She referred to me as “the famous Batten blogger” in a photo that we took together. Now it has never been my goal to be famous and I doubt that I am that. Even so, I am happy to know that someone that is held in such high regard thinks that highly of me. I enjoyed having our picture taken together. Especially when little Tayla was in the frame. Bobbie put Tayla in my arms so that she could have a picture of the two of us together. What a compliment that was. I really enjoyed meeting Jay Riddle and sharing a couple of short conversations with him. Together, these people are a very charming family of four, and you know, there isn’t anything that they wouldn’t do for little Miss Tayla. That would include leaving their home and extended family in Australia. Bobbie is a school teacher that has put her career on hold to care for Tayla. Fortunately, Jay’s career field involves working for an American based company. This allowed Jay to do a transfer and move his family to the United States. Their hope was that by doing so, they would be able to get little Tayla in to a clinical trial for Batten Disease. I am so pleased to be able to say that this became a reality. Tayla is now undergoing enzyme replacement therapy and she is rocking the house with it. Yay Tayla! I am so happy to know and to have met the Riddle family in person.
There are not too many things that are more enjoyable than having a meal together with friends and family. This was definitely true at the conference. The food that was served was, for me, well worth the price of admission. Not only that, but seeing all of these Batten families gathered together was priceless. I enjoyed talking to a few of the families I had just met and I very much enjoyed getting to better know those which I had become well acquainted with through social media. I spent time with Marlo Schinell and Dante’, as well as Dixie Bergeron and her rockstar son Jacoby. Jacoby is quite the character. Alicia Headrick was there with Miss Lydia and Jacoby made sure that Lydia’s face got wiped clean to his satisfaction during the meals. Awesome Job Jacoby. I already had a ton of respect for Dixie before the conference and that was only helped by meeting her in person. She has done so much for Jacoby regardless of whatever circumstances she might be facing at any given time. I got to meet her daughter Myracle as well and she is quite the little lady. Her and Jacoby are, of course, very close and that was evident in person. Marlo is another awesome Batten mommy. She is an educated person but she has set aside her career ambitions in order to care for Sir Dante’. As I said before, Dante’ is a real teddy bear of a guy. I Don’t know what got him going at dinner, but he started laughing hysterically and it was so funny. His laughter is infectious!
I had just finished dinner soon after the start of the conference and I was headed for the exit. I happened to look at one of the tables where I spotted yet another smiling face. Of course, I had to stop and say hello. This person turned out to be Laura Johnson and she was sitting with her daughter Hannah. I had been friends with Laura through Facebook but I had only chatted with her a couple of times. Her lovely daughter had been diagnosed with CLN3 Batten Disease only two months prior to the conference. Laura felt strongly that she needed to be present with Hannah at the event. When it comes to Batten mommies, I am amazed by their determination in doing what often needs to be done for their children. They both wanted to be at the conference so badly and Laura had started a GoFundMe account for just such a need. This, in order to travel to Nashville. She had no idea, even until right before the conference, as to whether or not they would make it to Tennessee. People responded generously and they helped to make the trip possible for this warrior princess and her mom. What is amazing to me is that Laura would drive her and Hannah for thirty hours straight in order to get there. I have a nickname for moms like this. I call them Tiger Mommas. Dixie Bergeron fits into this mold perfectly and Laura is yet another fine example. There are so many that I have grown to respect. I am so glad that Laura and I got to meet and talk. Hannah is amazing. She is soft spoken and really sweet. She answers questions well and seems to be accepting when it comes to her condition. The resilience of these kids is something that I find so inspiring. I don’t yet know Hannah’s complete story but she seems to accept the fact that she is legally blind. Hannah really enjoyed doing crafts and making the things that she was so proud to show everyone. She seemed so happy to be there and I really enjoyed spending time with her and her mom at the conference. I am sure that it was no mistake that our paths crossed and it was such a pleasure to meet both of them. Their life together is a story that I would love to tell someday soon and our meeting is something that I will not forget.
There were a few surprises for me at the conference and this is one that I never would have suspected. I was in the lobby at the beginning of the event and I was surprised by the appearance of a very special young man. I looked down and who would I see but Daniel Brown of Daniel’s Defenders! There he was in person with his handsome face and thick brown hair. I am so glad that he brought his parents with him so that we could also meet. I had chatted with his mom Lori Anne Marie on a couple of occasions and I am also FB friends with her husband Tony Brown. Theirs is a journey that I have followed for some time now. I was happy to meet both of them and that was something that I hadn’t expected to happen. It was nice to meet Daniel’s dad. We talked a little bit about family life and each of our lines of work. Lori has done a fantastic job of sharing Daniel’s journey with all of us through the Daniel’s Defenders Facebook page. She is an outstanding Batten mommy and I loved the fact that I was able to meet her as well. Their devotion to handsome prince Daniel has been well chronicled through Lori’s posts. As a family, they help Daniel battle Battens and they will not give up! Yet another inspiring family and it was a real privilege to meet them. In fact, there were so many wonderful families there. Why are they wonderful beyond what a normal family would be? It is because of what they face together and how they care so much for their warrior prince or princess. Some families have both.
Another one of these dear families is the McCorkles. That would be Matt and Misty playing the part of Batten Dad and mommy. Their handsome young warrior man is Micah and Micah has a awesome big brother named Maddox. It was such a pleasure to meet this charming young couple and their little prince. It may be a bit of a stretch but there was a small connection between us. You see, they are from the great state of Louisiana and that is where I spent much of my time in the military. In my case, I spent my time near New Orleans, whereas they are from the Northern part of the state. I have some very fond memories from that time in my life and so I appreciated the fact that they are from the Pelican State! As a family, they had to transplant themselves to the state of Ohio so that little Micah could receive the enzyme replacement that is available to kids with CLN2. They have since returned home because the therapy is now available at their place of origin. How wonderful! We talked a bit about my blogging and also about the things they face as a Batten family. We talked about Louisiana too! The best thing that we talked about was Micah and what a special guy he is. You know what? These kids are all so special and they all have a big piece of my heart. It was so nice to meet and talk to Matt and Misty. It was really special to meet Micah the prince!
I could go on forever, talking about these families but what about the hosts of the conference. In fact, I wonder. Where would these families be without BDSRA? Certainly, social media is a huge outlet and way to connect the families together. I am sure that a lot of them simply pick up the phone and talk. It is as I had said earlier. The conference is just like a family reunion, and in fact, that is what it is. The conference is such a big undertaking and it would be enough if BDSRA existed just to support the event. They do, in fact, do so much more and I am certain that having such an organization helps to bind the Batten community together. Just think about what it would be like on an emotional level to be told that your child has Batten Disease and not knowing where to turn. You find out about an organization that can offer support and they provide you with the resources that you need at the beginning. I am certain that BDSRA helps to connect newly diagnosed family members to those that are farther along on the journey. Then, there is the research support that they offer. Research doesn’t happen without funding and having an organization such as this is vital to that cause. I am also certain that they provide a connection between the various researchers, as well as, people in the medical community. I am new at this but I am certain that the Batten Disease Support and Research Association is a huge support to the Batten community, and that Dr. Margie and her staff have a crucial role in the battle against Batten Disease. There needs to be a voice so that people can hear and that is a big part of their mission as well. I was so thoroughly impressed with the conference and it would not happen without them. I know that there are some key people that serve on the board and that they help to steer the organization in the proper direction. I have never been a witness to any event such as the one I attended over this particular weekend. I may be a little biased in that though.
In the beginning, I had not purposely sought to have a role as an advocate for children that have Batten Disease. I just found that I loved telling these families stories. I know that there are people that are more capable than I am and so I appreciate every family that gives me the opportunity to write about them. The most recent story that I have done about a family here in the States is the one about little Conner Beish from Maryland. I called the story “That Kind of Love - Conner’s Story.” and it was one of the most complete stories of them all. This is only because Conner’s mom Hollie did an outstanding job of providing me with the information that I needed. It was wonderful to be able to meet Conner in person and I am so glad that he brought his mom and dad with him. Jeff and Hollie Beish turned out to be the kind of people that I thought they would be. Extremely nice! Conner’s older brother Jaxon is the best and I would have liked to have said hello to him. He was, however, always on the move. Awe, that’s okay Jaxon. Together, these folks are the kind of people that I would love to have for neighbors. Just seeking to be an average family, they have been asked to do things that most average families will never have to deal with. Jeff puts in long hours at work to support his family and that is something that I can relate to. I really enjoyed talking with him. Hollie is a special mom who takes care of business and she, without a doubt, loves her kids immensely. It was very special to meet this family in person after having written their story so recently. Conner is such a handsome little guy and as a family they are all Fighting For Conner! You can certainly understand why they would!
I cannot always put it into words as to why it is, but these Batten children do something to me. Perhaps it is my own position as a parent to a person with special needs combined with the feelings that I have about the plight of these children. The way that they battle and show us their resilience. They just amaze me, and to have so many in one place was truly special to me. I was so happy to meet the Swindall family at this year’s conference. Again, I had Kirsten Swindall on my friend’s list but had never had any interaction with her online. Her daughter Brianna is yet another very special warrior princess with CLN3. I also got to meet Kirsten’s husband John and their other daughter Hope, briefly, at dinner. The Swindall family are natives of Tennessee and I found them to be extremely pleasant and very personable. It is so easy to see the love that they have for their daughter Brianna and I can easily see why. I was able to spend some time talking to her during breakfast time, twice, and that was truly special. Brianna was very happy to show me the crowns that she had made and she wore them proudly in her hair. She also loved playing with her spinner toys and she loved the food at the buffet breakfast. This princess, with her bright red hair, was so happy to be living life in spite of all that had taken place and she was a joy to be with. Brianna is just so sweet and accepting. I enjoyed my conversations with John and Kirsten. At one breakfast in particular, Kirsten was able to share with me much of what life has been like and what all the journey has entailed. This is yet another regular family that has been asked to do something that is extraordinary. That is to care for the most special of persons. Meeting people like the Swindall family is the big thing from the conference that will leave a lasting impression on me.
Of course, I had a lot of time on my hands being by myself over the four days that I spent at the event. It took me a little bit to figure out where “the crowd” hung out. I found them outside in front of the hotel and this is where I spent a lot of my time. I loved hanging out and just listening to everyone talk about life and what it is like for them. Some of these folks have children that currently battle Batten Disease. Others have children or grandchildren that have gained their precious little wings. Pam and Crystal (my two buddies) were always there and I loved hanging out with them. I also loved having Dixie and Jacoby around. Dixie is a hoot and she is one strong Batten mommy. I loved it when Marlo and Dante’ would show up for a bit. If you haven’t figured it out yet, meeting Marlo and her rockstar son were a big deal to me. Dessie Lowe spent time out front and I enjoyed our conversations. Jennifer Whitfield Vaughn was frequently there too. She has the most darling little warrior princess for a granddaughter and her little name is Jayline. There were many others. Some I introduced myself to and there were others in which that wasn’t necessary because social media had done that for us. These are all special people that have been asked to do something which is much more than ordinary to me and so I listened carefully. I am by nature fairly withdrawn until I get to know someone and I would like those that I didn’t reach out to, to know something. I want everyone in the Batten community to know how much I appreciate them for all they do as parents and caregivers to the most priceless children in existence (I’m injecting my personal feelings here).
I do not have words that can adequately describe what being in the memorial room was like for me. I am sure that it would be very different if I had lost a son or daughter who had battled Batten Disease. The memorial service itself was both very moving and very fitting. It is so important to never forget those who have battled. I was able to view the names of those children that I had followed closely, as well as, some whose names were very familiar to me. I saw the name of the one who had made me aware (the most beautiful name) and those who were her contemporaries. I do not not remember the gentleman’s name, but I was able to talk with one of the people who were responsible for the memorial’s creation. He himself had lost a child to Batten Disease. He told me all about the memorial and shared a lot of interesting facts about some of the names that were on it. This has all served to deepen a sense of responsibility in me. What an absolutely special group it is that makes up the Batten community. These kids change people’s lives even though their time on this planet is limited. I have tried my best to capture this fact in my writing.
There is no way that I could adequately express to you what this entire experience has meant to me. You may have guessed that being at the event has left a lasting impression on me. I was told that there were over 400 people at the event and it would be impossible to mention everyone that I came in contact with. Please know that each family is looked at in a very special light because of what the Batten journey entails. There are a few others that I must mention. It was so nice to meet the Hiltman family. Both Jay and Stacey had some very kind words for me and it was so appreciated. Both of them were very personable.They have done a wonderful job of sharing their son Nathan with all of us, as well as, sharing the journey that they are on as a family. It is easy to see that Nathan brings challenges with him but he has so much charm and he is an extremely special guy. I don’t know where the connection with Edward Scissorhands originates but he is apparently one of Nathan’s favorite characters. That is so cool Nathan and it was so nice to meet you and your family!
The hotel was quite big and had a lot of stories. That meant that unless you wanted to climb stairs, you had to wait at the elevator. I met a few different families while I waited. Previous to the conference, I had started to follow a page called Little Batten Warriors but I had not yet spent a lot of time on the page. This is because I generally am involved with one family at a time as I write. The page is about the journeys of both little Kaleb Diaz and his sister Mia. They both have CLN2 Batten Disease and both are undergoing enzyme replacement therapy. So in reference to the elevator. I was waiting and had an opportunity to say hello to Kaleb and his father Alex. I have to admit that I goofed up and mistook little Kaleb for a girl when I first spotted him with his dad. Why the mistake? Well you see, this entire family happens to be very attractive and they have let little Kaleb’s hair grow out. Kaleb is a very cute little warrior man and his sister is very very adorable as well. I saw both their mom, Barbara, and little Mia at the conference but we were both too preoccupied to make contact with one another. Barbara did, however, contact me after the conference had ended via Instant messaging to express her appreciation for what I am doing with my blog. I can’t tell you how much I appreciate things like this! I did spend a few minutes talking to Alex and it never would not have happened if it was not for that wait at the elevators. I hate the fact that Batten Disease exists because of the way that it affects young families like the Diaz family. I do, however, so admire the way that they handle the challenges that have come their way and I promise that I will pay closer attention in the future. It is so nice to have met the Diaz family. Little Kaleb and his sister Mia are precious and priceless and they are each, a little warrior. One is a prince and the other, is a princess. Alex and Barbara also have a daughter who is unaffected by Batten Disease. Her name is Jaylen and she is now thirteen years old.
Oh my gosh! I could go on forever. It was so nice to meet Kayla Neveri in the Lobby at Starbucks. Even though our time together was confined to a single conversation, it was special and we continue to converse online. This, as she shares about her little princess Breanna who has Battens. I enjoyed meeting Michelle Wheeler who is a very nice lady. She has a handsome grandson named Login who has Batten Disease. I am glad that we had the opportunity to speak with one another!
I ran into a couple in the elevator on the first night of the conference and their names looked familiar to me. It was Dean and Melissa Pollman and they just happen to live in a city that neighbors the one I live in here in Oregon. This is another couple that I have never chatted with online but there we all were, in Tennessee, at the Batten conference. We had a nice conversation at the reception and I hope to see them again sometime. Very nice couple indeed! The Pollman’s have a beautiful daughter who has CLN1. Her name is Haley and she was not in attendance at the conference. The Pollman’s have set up a foundation for Haley and they also have a Facebook page for her. The name of the page is Haley’s Heroes Foundation. She is a most adorable little girl. Please check out her page if you haven’t already.
It was on Saturday night that I was approached by a dear person named Monica Bearman and she obviously knew about my blog. In fact, she was another Facebook friend that I had never made contact with. She later introduced me to her husband Adam and they turned out to be really nice people! Monica expressed interest in doing a story about her princess of a daughter whose name is Kristina. You just know that I could never pass up an opportunity like that! I look so forward to the knowing more about this family and it was a pleasure to meet them.
There are others that I could mention and I hope that you will forgive me for not doing so. I absolutely have the utmost respect for all who love and care for these children.
It was huge for me to be able to meet Tracy and Jennifer Vanhoutan at the conference. For them, the battle against Batten Disease is personal. Not only did they have a handsome son named Noah with Battens, but also a darling daughter named Laine. Both are now beautiful angels. Tracy and Jennifer remain active in raising awareness and in trying to bring about change. Tracy has served on the board for BDSRA and they are both extremely knowledgeable about Batten Disease. This couple is pure class, through and through, and it was a privilege to be able to meet them! The community that they remain a part of is very fortunate to have them both in their corner.
Let me say that I am always looking to connect with new people within the Batten community and also those who advocate for these families. I ran across Kristy’s name at some point on Facebook and I sent her a friend’s request. She was somehow connected with a charming Batten child named Bentley Betts, however, I wasn’t sure how that was at the time. I came to find out that she was Bentley’s home care nurse while he was nearing the time in which he would complete his journey. Kristy Thetford Prince’s life was changed as a connection was made with Bentley and his family. I think that Kristy and I both took notice of each other’s involvement in the Batten community. This, as we noticed each others activities on FB. Both of our lives have been greatly affected by these kids as we follow their family’s journeys. As Bentley’s nurse, Kristy was deeply connected to this little warrior of a young man. Her’s was a first hand encounter of a very special kind. This is how she would put it to me, “From the moment I became Bentley’s nurse, my life has never been the same. In saying that I mean I never knew about the disease ‘Battens’. I read and studied about this disease before I started with Bentley but It still did not prepare me for the extraordinary experience that changed me from that day forward.”
My own experience cannot be compared to that of Kristy’s but what I have experienced through writing these stories is notable. Having read multiple accounts and attempting to put them into words that do the stories justice has changed me. Kristy talks about her feelings towards Batten families and I can only say that I try to relate to her as best that I can. This is how she finished her comments as she shared from the heart concerning these families, “I love them and I pray daily for these children and their families. I strive daily to remember to be thankful and I keep Bentley close in my thoughts and I draw my strength from him. When things seem tough on my end, I see his smiling face. I hear his laugh and I know he's in Heaven running around and whole and I know I shall see him again one day.” It was an absolute pleasure to be able to meet Kristy at the conference. It was also so nice to see little Bentley’s parents, Barrett and Laura Betts, at the event. My conversation with Barrett was brief but meaningful and it was nice to meet in person. I am sure that things haven’t been easy for this young couple and I am so glad that they could be in attendance and be surrounded by members of their Batten family. It is easy to see that Kristy and the Betts family share a bond that won’t be broken. The bond comes from a shared love for little Bentley. These children change people. I know that to be the case with both Kristy and myself. This is not even to mention the impact that they have on their family members and others that are close by.
Being at the Batten conference and connecting with many of these families in person is an experience that will stay with me. Many that I met have made a lasting impression on me, and their kids? They are, to me, the most special children on the planet. I will never be able to completely put it into words but I know it to be the truth. This is the way I feel. I am so grateful to the folks at BDSRA for allowing me to attend the conference. It was so nice to meet Dr. Margie Frazier in person and to shake her hand. I also appreciated meeting Tracy Kirby. She made me feel welcomed at the event! The venue could not have been anymore spectacular. I am glad that these families have each other and I am also glad that they have other people in their corner. It is wonderful to know that the Batten Disease Support and Research Association exists to serve those who are so deserving (Funding, Research, and support for these dear families as we look for a treatment and cure). I will always consider it a privilege to be involved in the Batten community and in the lives of those who Battle Batten Disease. The stories that I have been allowed to work on have left a lasting impression on me. Can you tell? I hope so because it is true. Being at the event was a special time and a time that I will never forget. More than anything, these kids and their families will always be etched in my memory. Thank you allowing me this special privilege and thank you for taking the time to read about the experience.
Blogger and Advocate
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
*Journey Unexpected - The Rich Family
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