Angel Isaiah (Izzy's) Story

December 22, 1997-October 17, 2004

This is my son, Isaiah (a.k.a. “Izzy”). He was full-term and born with Hydranencephaly. As a result he has CP, a seizure disorder, scoliosis, cortical blindness, reactive airway disease, a VP shunt, and a g-tube. Right now my son is 2 years and 3 months old. He has had several hospital stays and has been very ill many times. For him the common cold will easily turn into pneumonia. He has a very fragile immune system. He has just started eating orally again but unfortunately will not gain any weight. We are currently trying several various diets and hopefully will have some luck. My son has been through quite a bit in two short years and through it all has remained to be a very happy person. He has managed to continue to blossom and improve slowly. No matter what happens to Izzy he will always smile. Although Izzy cannot communicate verbally or through sign language, he still talks to me. He uses his eyes, his body, and his touch. Many doctors have informed me that Isaiah would never be aware of his surroundings but continues to prove them wrong. In addition to this, most of what we have been told is incorrect. When he was brought into this world we were told that he wouldn’t live through the night. Once he proved that theory wrong we were told he wouldn’t make it through the month. As you can see I never got an accurate prognosis. So many doctors are terribly misinformed and uneducated when it comes to Hydranencephaly. They are way too involved in text book findings rather than actual true life experiences.

Isaiah is able to do many things. He plays with his toys by picking them up, holding onto them, exploring them with his mouth, and of course, throwing them. He is able to identify certain objects, people, voices, and several other things. He’s a great child with a beautiful soul. I know that if God does decide to take him from me one day that heaven will be one lucky place to have such a sweetie like my Izzy.

Izzy died on Oct. 17, 2004