Little Keith’s Background
Hi everyone this is our first entry for Keith’s blog site. I thought I would give you a little background on why we decided to take this step.
Keith was born December 3rd 2003. To everyone who saw him he looked like he was a healthy baby boy. The first time I noticed he was sick was when he was three weeks old. He had started to develop flu-like symptoms, and he began to loose his hair in large amounts. The doctors couldn’t tell us what was wrong and sent us back home. The following week Keith dropped down to his birth weight. He was finally admitted into the hospital where they tried to diagnosis him but wasn’t successful. The doctors thought it was a protein allergy at first. No one knew what rough road we had ahead. I could still remember those long nights up crying next to my child that was in so much pain. He was hooked up to so many machines and he would just lay in his bed so small. After four Broviac surgeries, TPN, infections, nine months in the hospital, and not being able to eat you would think a tiny sprit would give up, but not Keith. He made it.
He was diagnosed with ectodermal dysplasia (ED) with a primary immune deficiency. He now receives intravenous immunoglobulins (IVIG) weekly and his daily regimen includes seven medications two to three times a day. Because of Keith’s allergies he is unable to eat food and has to drink a special formula from a bottle. He still is not able to sleep through the night and wakes up for a bottle twice at night.
The ED affects his hair, teeth, nails, and skin. Keith has eight teeth that are peg-shaped, the inability to sweat, and sparse hair. Since Keith will not get all of his teeth he will need dentures. He has constant skin infections and he often scratches big holes into his skin due to the itching. We have to keep him inside as much as we can so we wont expose him to germs. If Keith was to get sick from something common to you he could be set back for months and admitted to the hospital. His interaction with other children is limited, but that doesn’t stop his personality from shining through.
We just came back from the NIH last week and we saw Dr. Ashish Jain. This was our second trip. He is trying to diagnosis Keith so we can move on to the next step, treatment. All of the doctors are saying the same thing as far as a diagnosis, they all say that he has all the NEMO qualities but they cannot find it in his genes. Therefore they are unable to give us an answer at this time.
I would like to thank all of our family and friends that has stood by us, the staff at Cardinal Glennon Children's Medical Center, the people at the N.F.E.D. and Andy's dad Andres Trevino. He is responsible for setting up this website.
We have set this site up for Keith with the hope that we will be able to raise funds, awareness, and support for this rare disorder that our son lives with. When we first found out about this ectodermal dysplasia (ED) with a primary immune deficiency there was only one family on the internet going through what we were going through, Andy’s family. Now there is a network of families that can share support through the good and bad times.
We appreciate all of the love and support that are family has given us and ask that you continue to keep our baby boy in you prayers.