Ataxia-Telangiectasia..sounds a bit like speaking in tongues, but it's our new battle and we will fight it til the end. As many of you know Joshua and Jacob have had "low muscle tone" since they started walking. They have had numerous exams by neurologists, neurosurgeons, muscle specialists, pediatric this and that...you name it we have probably seen it. Recently we have been seeing a Genetic team at Children's National. This information has just recently come about and we are still trying to comprehend it. AT is a very serious and complex disease. I'm just going to give you the scientific data as it was given to us. It's a gene mutation. Ben and I are both carriers (which is bizarre) of the mutated gene. It is a neurodegenerative disease affecting the immune system and predisposing kids to leukemia and lymphoma. The Dr. said that by the age of 10 they will be in wheelchairs, they will lose ability to communicate and basically be intelligent minds trapped in a body that cannot function. 1/3 will get leukemia or lymphoma, 1/3 will get chronic lung disease. There is no cure and there is no treatment, they will likely die by the time they reach their 20's.
Now let me tell you the Fernando prognosis...we believe in God...we believe in MIRACLES..we have one living in our home..if you need to see to believe feel free to stop by and ask to see Luke Fernando, but not after 7pm as that is his bed time! We will not be controlled by fear of death or disease! God is able to do EXCEEDINGLY and ABUNDANTLY above all we can ask or even think...WOW that is AMAZING!!!! We worshiped our way through Luke's cancer and we are going to worship our way along this road...One day at a time.
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