|| Mount Dora, FL || Submitted: 2011-04-20
|| Total Cost:
Progress: We've raised 12% of the cost of this application!
Medical Cooling Vests Needed
Hello, My 6 year old son died on June 14, 2010 due to a fatal 'awake' episode of Malignant Hyperthermia, a rare genetic disorder. Since this devastating tragedy we have been searching for medical answers, seeing many doctors, incurring many additional expenses, missed work, etc. We have learned that my son had an undiagnosed neuromuscular myopathy, Central Core Disease, and it has been confirmed that my husband, and 2 of my other children ages 5 & 2, also have this condition.
This is a heat related illness and my children and my husband are highly susceptible to overheating which can trigger Malignant Hyperthermia, muscle breakdown, etc. To make matters worse, we live in Florida and the hot summer months are quickly approaching. The neurologist we have been seeing suggested cooling vests for them, which would help to maintain their core body temperature at safe limits.
These vests are simply outside of our budget. We have had so many other additional medical expenses recently and we don't want to make matters worse by adding this to a credit card. I need to keep my children safe, I just can't lose another one to this disease. Thank you so much for your consideration.
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