Welcome to Alex's Page!
Alex was born on August 01, 1996 to me and his daddy, Denny. All through the pregnancy we were expecting a healthy child, as is the case with most/all first time E.B. parents. (There are no tests for this disease, unless E.B. has previously occurred, and certain testing has been done within a family.) We were certainly shocked when we learned approximately six hours after his birth that Alex was not a healthy "bouncy-baby", as were our previous children. Neither Alex's dad nor I had ever even heard of Epidermolysis Bullosa before. Many hours after birth, Alex was airlifted to Children's Hospital in Seattle where the doctors almost immediately gave the "unofficial" (unconfirmed by testing) diagnosis of Pyloric Atresia - Epidermolysis Bullosa. His prognosis was grim. Most have not survived through infancy with this form of Epidermolysis Bullosa. A skin biopsy to confirm Epidermolysis Bullosa was done on August 02, 1996. Alex underwent pyloric resection surgery August 12, 1996 and came through fine. Alex was sent home on September 24, 1996 to spend the remainder of his days with his parents and two siblings, a sister and a brother. All through Alex's life he struggled with poor weight gain. He died (in my arms) of malnutrition on October 27, 1996. We are grateful (to God) for the time we were allowed to spend with this adorable little person. He had all the character of any other baby, but seemed to have more wisdom in his eyes. He and I would stare into each-others eyes for long periods of time while I would gently pat the top of his tiny head. We had the opportunity to see and hear him smile and laugh many times, and those are my best memories of Alex, and how I wish to remember him. We did our best to remain positive and smiling around him, so we know that's why Alex smiled so much and was happy in his days with us. He had all the hugs and holding (plus maybe more) that any other baby received. I hope God remembers him and has a special place for him and all other children who have died, as they are innocent and definitely deserve a special place with Him. Amen. Best wishes to all who have gone through the loss of a child...it is the most difficult thing a parent wishes to never go through, but has. Before Alex, his father and I had a beautiful healthy girl, now five years of age. We do not know if she is even a carrier of any E.B. related mutation and will not pursue testing. Since Alex, we had one more (last) child. He was born in May of 1998. We had his amniotic fluids matched with Alex's blood, Denny's and mine, and we learned relatively early in the pregnancy that although he is a carrier of his fathers mutation, he did not inherit mine and therefore would also be a healthy child and not actually have E.B. In the recessive form (the type Alex had) a child must inherit both parents' mutation in order to actually have Epidermolysis Bullosa.
Click on image below
LINKS
|
