About a month ago, someone very close to me received a phone call from a non-profit organization that grants wishes to children with life-threatening medical conditions. My heart sank. Though this foundation is wonderful in its doings, I was not quite prepared. I found myself asking myself, “Is she really this sick?” I know she is, but no one ever wants to think the worse. This group of people wanted to grant “Mickey” a wish. It could be something she wanted or would like to do before things got worse and she was unable to enjoy it.
Apparently, the doctor of this young girl sent word that “Mickey” was quite ill. “Mickey” is 11 years old and suffers from Ehlers-Danlos Syndrome and Mitochondrial Disease. These diseases affect her joints, her digestive system, her heart, her muscles and skin. She often has seizures. The list goes on and on. “Mickey” can be perfectly normal one day and then the next be so weak that she cannot get out of bed. She got to the point of not being able to eat so the doctors inserted a feeding tube a few months ago. An organization that assists children arranged for her to have a wheelchair. Public school has been replaced with home school. Life that most kids her age live has become almost obsolete. “Mickey’s” life is consumed with a never-ending list of appointments to GI doctors and physical therapists to Neurologists and surgeons. This is not the life of an ordinary child.
Yet through it all, “Mickey” remains steadfast in her fight. Where depression and self-pity would consume most of us, “Mickey” continues to give it her all. On days when she is able, she loves spending time with her 5 siblings, her friends and with her dog. She loves to sing and dance and act silly. But for each good day, there are at least 3 bad days.
Though cures for both Ehlers-Danlos Syndrome and Mitochondrial Disease may not be in the near future, I am sure Mickey’s fight is not in vain. She knows her life will end young, but each day she is able she is living it to its fullest. Mickey’s wish, by the way, is to visit Disney World.