We need to raise over $3.5 million dollars for research
and gene therapy for Batten Disease CLN8.
Ever since Sebastian was a toddler, he truly believed he could heal people with his hugs. If someone bumped their head, scraped their knee or broke their arm, he would say: “Are you okay? Can I give you a hug? I can heal you.” For a long time, we would just smile and laugh and say how cute and sweet he was, but Sebastian would get upset if we didn’t believe him. He insisted that he had healing hug powers.
Sebastian is now 18 years old, and, to this day, he whole-heartedly believes he has healing hug powers. We can’t explain it, but we believe it too.
Sebastian was born on July 18, 2003. He was just perfect – a beautiful, healthy boy with good loud lungs.
For the first four years of Sebastian’s life, he developed as expected. He was very outgoing, sweet and kind. He loved T-ball, soccer and swimming. He was a thriving young child.
In October of 2007, Sebastian collapsed with his first seizure – a clonic tonic seizure mixed with partial complex seizure. He was hospitalized and then told to see his doctor. Ultimately, Sebastian was diagnosed with epilepsy, and he was prescribed anti-convulsant medication to control his seizures. Until doctors found the right medicine and dosage, Sebastian’s seizures grew more severe and frequent. He could not go more than about four days without a seizure.
Batten disease is a rare genetically inherited disorder, which belongs to a group of progressive degenerative neurometabolic disorders, known as the neuronal ceroid lipofuscinoses (NCLs). Neuronal ceroid lipofuscinoses (NCLs) are characterized by genetic mutations which disrupt cells’ ability to dispose of wastes, resulting in the abnormal accumulation of certain proteins and lipids (fats) within the nerve cells of the brain and other tissues of the body, resulting in progressive neurological impairment including developmental regression, seizures, blindness, behavior changes and dementia. There are many forms of neuronal ceroid lipofuscinoses. Mutations in at least eight different genes are known to cause Batten disease.
CLN8 typically causes either late infantile neuronal ceroid lipofuscionsis (NCL) or Northern Epilepsy (NE). Kids with NCL get really bad seizures, and very early vision loss and cognitive deterioration (at about age 2-3 years). These kids have a shorter life expectancy. The kids with NE don’t usually get any seizures until about 5-10 years, and the seizures are much more milder. They also tend not to get significant vision loss and cognitive deterioration is mild and much more slowly progressive. Sebastian is a blend of NCL and NE-certainly from the seizure perspective he is much more NE than NCL—which is good for both seizures as well as life expectancy/cognition. This particular variant is extremely rare and the disease course can differ significantly among cases, making it difficult to predict.
What I can't see ... I use my Healing Hugs to Feel!
TO CONTACT THE FAMILY:
Law Office of Michael E. Fox
SEBASTIAN VELONA FOUNDATION:
Make Checks Payable to:
“The Sebastian Velona Foundation”
24320 Main Street,
Santa Clarita, CA 91321
(661) 298-1220 | [email protected]