Kellen Thomas was born May 30th, 2012 exactly two weeks before his due date. He was determined to be a May baby like so many of our other family members. Upon delivering Kellen he was diagnosed with Epidermolysis Bullosa as known as EB. It’s known as “The worst disease you’ve never heard of” because it is such a rare genetic skin disorder. This meant Kellen was born without skin present on his right leg, left heel, blistering in various places (including internal) and his nails were thick and black in color. He was hospitalized the entire first month of due to the bandage changes which took up to two hours and infection control. Because of the infection control Kellen can not attend daycare making me his primary caregiver.
Kellen’s EB is officially diagnosed as dominant and recessive dystrophic. This is extremely rare to posses BOTH forms.
After arriving home we had a home health care nurse everyday the first few months then a couple of times a week until his first birthday. Along the way Kellen has had wonderful unaffected skin and horrible painful wounds. He now is getting them internally which is hard to determine since Kellen is nonverbal. He is nonverbal because he also has Autism Spectrum Disorder on the moderate to severe scale. He has always been nonverbal but did know quite a bit of sign language before his digression at around 18 months. Now his main from of communication is tantrums.
My main goal everyday is to make sure Kellen is happy and has the best quality of life possible. He really enjoys movies and getting the character to match the movie to watch it with him. I also believe that staying positive and having faith are keys to getting through all the challenges that come with having a child with special needs.
Kellen is my MIRACLE! The courage he shows me everyday lets me know it’s all worth it and to keep moving forward.
