Eli with some friends

Eli gets a rare visit to sit in on a school day

Elijah was born on August 29, 2000, in San Francisco, California. He was born exactly one year and 3 weeks after his brother, Noah.

 

We had a normal pregnancy and a normal delivery. Elijah was born perfect. He weighed 7 lbs 8oz.  At the age of six months, Elijah suffered his first seizure and stroke.

 

We were shocked to learn, after many hospitalizations and medical tests that he had Chromosome Ring 14, and that it was "de novo" mutation, which is a genetic mutation that neither parent possesses or transmitted.

 

Little did we know what this meant.  Eight years later, we are ready to share his lifes events in a public forum.

 

It has been a blessing having Elijah is our lives and  we hope he continues to thrive, in his own way.

 

The bad news - Elijah has a rare form of epilepsy. He has seizures that typically have apnea. He stops breathing during these episodes and requires CPR, oxygen and medication. He has also has numerous strokes and has to relearn speech and walking many times.

 

Eli requires 24x7 care and on a daily basis is dependent on anti-convulsant therapy and his Vagus Nerve Stimulator (Google "VNS").  Elijah also has a g-tube placed in his stomach. He eats mostly through this tube, but can tolerate small amounts of water and food orally.

 

The good news - He's generally not in any pain and has little understanding (we think) of his situation.  Eli's always happy (when not zonked from a seizure), and the joy he brings us as parents is immense. 

 

While we've had to drastically adapt our lives lives around his needs, we've also been blessed with the challenges and love that raising such a child brings to your life.