About 2 weeks after arriving, we received the diagnosis: Recessive Dystrophic Epidermolysis Bullosa (RDEB). This is a very rare-one out of 2,000,000 live births-genetic disorder where the skin does not attach to the child's' body. Everything that touches little James can hurt him, from the diapers and clothing that he wears, to the car seat he has to be in when going to the doctors. Not only does his condition affect the skin, but it also affects his mouth, eyes, and esophagus. After two months in the hospital, little James was released, the doctors saying good luck, there is not much we can do to help. Most children with RDEB do not survive past infancy, and those that do, have a life expectancy into their early teens. Repeatedly, we have been told that he should be on hospice care.
Little James can get blistering in his throat. These blisters show no symptoms until they get large enough and cause enough pressure that they burst. With no warning beforehand, little James starts to choke and cough up large amounts of blood and mucus when this happens. Due to the fact that there is no precursor symptoms to these events, little James needs constant supervision, so if he begins to choke from ruptured blisters, the blood and mucus can be immediately suctioned out so that he can breathe.
Unfortunately, finding a babysitter has been close to impossible, since even most of the nurses are afraid to touch or handle little James. Therefore, we, as his parents, take shifts between work and care giving, trying to financially support our son with the extra burden of medical expenses and a health care system that completely failed him for the first three months that he was home, due to a clerical error while in the hospital.
Little James is one of the happiest children that we have ever known, always flirting with the nurses that come to visit, and laughing and playing all day long. He rarely cries about his boo-boos, and is very attentive to all that is going on around him. He is a joy to those around him, and has taught many of us to focus not on the struggle, but on the love of life, and the beauty of new things. Regardless of how much of a joy he is to us, and how dedicated we are in providing care to him, clerical errors have proven to be the largest problem we face in trying to care for our son.
Overall, life is good, and we laugh a lot. Just a lot of the normal everyday hardships that everyone has to deal with, and then a little more to add icing to the cake. Such is life!
Wish list for Little James and his family:
1. Help paying basic re-occurring bills, such as electric, propane, car insurance, and phone.
2. Help paying for re-occurring wound care products (bandaging and gauze) and skin care products such as Dimethicream that is not covered by insurance
3. New roof for house
4. Updated electrical wiring in house
5. Gravel for driveway
6. Tuition (Little James’ mother was accepted to Northern Michigan University’s Masters of Science program to study clinical molecular diseases-and has the opportunity to study first hand her son’s condition and work on research that could help him, but she has delayed her enrollment due to lack of funding (this is an on-line program, which would also allow her to stay home and take care of little James while completing the degree).
- Vanessa Liscomb
- Anonymous Manninen
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