Life Essentials Magazine - March 2017

Fundraising Spotlight
OUR STORY
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.
Within the next year, we noticed some
behavioral changes in Sebastian, but we
thought it had to do more with the medication
and the hardship of having seizures. He hated
them, and he got hurt sometimes from falling
during a seizure. We made many trips in an
ambulance to the emergency room, where
Sebastian was sewn back together time and
time again. We were very scared and worried
for our son.
At about six years old, we noticed that
Sebastian was having difficulty reading. He was
soon diagnosed with Retinitis Pigmentosa. The
Chief of Ophthalmology at UCLA told us that
Sebastian was losing his vision and eventually
would go blind by the time he was in his teens.
We knew that both diagnoses must somehow
be related due to the fact that we saw other
functions beginning to decline. For example,
Sebastian’s motor skills and cognitive abilities
were also deteriorating. He began slurring his
speech, falling behind in school, stumbling
while walking and needing more and more
help with even the most routine daily activities
like dressing himself.
Ultimately, Sebastian underwent DNA testing
at UCLA. He was diagnosed with Batten CLN8,
a fatal and degenerative neurological disorder.
A geneticist explained that this rare disorder
had no cure and would leave Sebastian blind,
immobile, cognitively impaired and ultimately
dead by his late teens or twenties. We were
absolutely devastated!