“Project Sebastian was started by the father of a young boy who was misdiagnosed in the beginning of their journey. Sebastian was diagnosed with epilepsy, then started losing his vision, then his cognitive abilities were slowly diminishing, and had trouble walking and talking. The seizures were becoming more frequent as well. “This is not just epilepsy, there is something else wrong with him,” said the father. Finally, after thorough genetic testing, we realized he actually has CLN8 a variant of Batten disease. He was told that “this disease eventually runs its course killing the patient. There is no cure. No hope. You should spend as much time with your son as you can…” What parent would listen? With nothing left but HOPE, Christopher Velona began a new journey of determination for a cure.
They began to search all over the world for anyone doing anything. They came across another family that has pioneered gene therapyreplacement. These clinical trials have shown success within the CLN6 variant. We did join their team of scientists to replicate the same practice, but for Sebastian’s variant of Batten disease CLN8. Unfortunately, we havebeen unsuccessful in getting pharmaceutical companies, research hospitals, and studies completed due to the fact that Sebastian is ultra-rare. He is the only known human currently with a split gene mutation of Batten disease CLN8. We are currently trying to get Sebastian onto other approved drug therapies as we now know that gene therapy and other treatments are not available for him at this time and may never happen. We are still waiting. Sebastian is slowly dying. Time is the enemy. So what to do now? How does one cope with the feeling of defeat and letting your kids down. All the advocacy, fundraising, and talks about this disease wasn’t enough to help them. I try to lean on other rare families all over the world, but a lot of them felt just like me. I realized no one had a weekly support group to go and discuss all these fears that I have. So I created one.
Rare diseases claim the lives of many children and teens. While most people wait for a cure they have nowhere to turn. We offer a community group support system that can help you deal with so many emotions, questions, and uncertainty. We realize that connecting with other families is essential to this journey. We will provide you with group meetings and counseling so that you can connect with others who are struggling like you.
Our mission statement is straightforward. Project Sebastian is a hub of information, education, and compassion. We will devote the time and energy necessary to educate, advocate, and provide support to fight all rare diseases. We also feel very strongly about connecting those in need that are suffering from all rare diseases. We will provide support groups for those wanting to discuss, share and connect with others going through the rare disease journey. Find out more at projectsebastian.org.”
