I hope that I was able to shed some light on what it is to live with mitochondrial disease. They are a long way from any viable treatment options but remain hopeful that something will become available to help all those who are affected. For all the challenges that Bryans mito presents us with, we are very grateful that he is currently stable. Despite the needles and labwork, medications, seizures, falls and fatigue, he is almost always happy and in a good mood. We are thankful for all of the progress that he makes and for his incredible enthusiasm and personality. This boy has never met a stranger ; ) They say it takes a village to raise a child, and that is even more true for a special needs child. Whereas our family does not have any daily assistance in providing for Bryans medical care or meeting his needs, we are so blessed to have had some of the most incredible people in our lives to teach him, to help him and to help us. Bryan has been lucky to have some wonderful classmates who get him, accept him and look out for him. And, I am so grateful for the amazing 9 and 10 year old boys who are kind beyond their years and have embraced him and made him a part of their teams the past couple of years (Desoto Marlins and Mississippi As --- Go NUGGETS). For everyone who has had a hand in making Bryans life better...we truly thank you. I dont think I can tag dozens people here so all of you who have taught, helped, chased, watched, held, snuggled and loved on Bryan...you are more appreciated that you will ever know!!!
Posted on: Sun, 21 Sep 2014 13:01:55 +0000
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