David was born by c-section and he had fluid in his lungs. He was given oxygen for a few hours and was put on an antibiotic in case there was anything else wrong. They ran all sorts of blood tests and all came back normal and everyday he seemed to improve, so on day 5 I went home from the hospital with what I thought was a healthy baby.

David did very well for his first two months of life. In his second month I started noticing him twitching his toes, and he started having problems with spitting up his formula. The doctors had me switching constantly thinking he was not tolerating that kind, I tried them all! He gradually got worse, noticing that he was very irritable, constantly spitting up, his hands went back into the fist position like a newborn (with the thumbs inside), and very inconsolable. I finally got a referral to a GI doctor which of course said, yes he must have reflux disease. They then put him on medication for this problem, which still showed no help.

In May of 1998 (5 months old) the GI doctor suggested to put him in the hospital overnight to do a PH probe test to check out this reflux problem, while there he thought it might be wise to let the team of neurologist look at him. Well, our overnight stay turned into 5 days, and lots of tests, (MRI, EEG, spinal tap, ultrasound, blood work), from that I had the answer that they strongly felt he had something neurological wrong but all the tests were showing negative. From all of those tests, I left the hospital with the answer that David did in fact have reflux, he had a severe case of reflux and the MRI showed signs that his brain was that of a 3 month old, not a 5 month old. They had me David back on the following week to run some more blood tests that they would have to send out of state.

David's neurologist called me on June 5, 1998 (6 months old) to inform me that David had Krabbes. This was not a new word to me as my best friend's next door neighbor's child had already died of this disease. So when he said it I knew it was terminal. There is no word to describe the feelings that overcome you when you are told your child is going to die. Our neurologist had suggested to get on the Internet to find out more about this disease and find other people going through the same thing. I had decided to talk with Dr. Kurtzberg and see if David would even be a candidate for a transplant. I proceeded with doing another MRI on David and took them and the original ones done at 5 months of age to Dr. Kurtzberg for an evaluation. From her recommendation David was not a candidate for a transplant due to the fact that he already had brain stem damage, she also shared that even from his first MRI at 5 months of age he was not a candidate. From that moment on I decided to do what was best for David and his well being.

So now knowing he was terminal and not having the option of transplanting, I made the choice to make him as comfortable as possible and make sure he felt every bit of love. I regulated him on Zantac and Regalin for his severe reflux and Klonopin for irritability and seizures. In August of 1998 (8 months old), 2 months after diagnosis he started having a difficult time sucking on his nipple on his bottle, I started using a haberman feeder to be able to squirt the formula into his mouth then he could just swallow it. That worked for a short while until September of 1998 (9 months old), he was having a hard time even swallowing what I would squirt into his mouth. So I took him to the doctor and did a moderate barium swallow study, that showed me there was too much of his formula that would just flow down the back of his mouth and go into his open air-way. Which of course led David to getting a stomach feeding tube. So on September 15, 1998 (9 1/2 months old) David entered the hospital to have his tube surgery. He had complications after his surgery, with his stomach not emptying as we began to feed him in the hospital through his new tube. It was a slow recovery for David and a long process before his stomach and digestion to start working correctly again. We left the hospital 11 days later with a ND tube down his nose to his intestine to feed him that way until he could use his stomach again. It took around 2 weeks after leaving the hospital for David to use his stomach tube full time. We had a mic-key button that once everything was working correctly again, did a great job at keeping David fed. As a matter of fact almost too good as he continued to gain so much weight he had a nutritionist come out to the house weekly to weigh him to monitor it closely.

David had a bacterial pneumonia in December of 1998 (1 year old), in which he bounced back from very quickly. Hospice became part of David's and our lives in January of 1999 to help with us making him comfortable. I feel David had the best of a bad situation, he was so loved by so many, something that a lot of people do not feel even after many many years here on this earth. David had a physical therapist, developmental therapist, a few nurses, a great doctor and pediatric office, a nutritionist, Hospice and a whole host of people praying and helping. On March 13, 1999 I noticed that David was urinating less and less throughout the day, he was checked out by the doctor and found nothing to be wrong. He continued like that throughout the week and then on March 18, 1999 (15 1/2 months old), he went to the doctor again and they ran blood work and a chest x-ray. His results came back that his kidneys and liver were doing fine but he had a bacterial pneumonia, this time in both his lungs. David rested only a couple of hours that afternoon the rest of the time he was coughing and very uncomfortable with refluxing. He was put on 2L of oxygen and a antibiotic to help fight this off. This one was too much for him to battle as the disease had progressed so far his ability to fight it off failed. David was called home to be with Jesus the next morning, March 19, 1999 (1 year 3 months and 17 days old) at 6:43 AM, in the arms of his mother at home.

David could feel all the love around him and he loved the attention and being held. We did everything that we could do to make his short life as good as it could be with this horrible disease. We miss him dearly, but trust in God that David is in God's care now and playing like he never could before.

David's marker at his grave says:  "He gave so much to be so little, but Angels always do."

Your mother, brother and sister love and miss you, we look forward to our heavenly reunion.