Kasey called today and the rest of the genetic tests came back today. Will apparently has Surf-1 genetic mutation. Yes, unfortunately he still has Leigh's disease. Kasey asked what the life expectancy is with this type of mutation and the neurologist said 5.4 years. Will is now 2 1/2. So, basically they are saying that we have 3 years left with Will in our lives. How can they know for sure? Well, according to studies, a 5.4 life span is the average. Really??? I'm not accepting that!! I strongly believe only God knows when our time on earth will end, and miracles do happen everyday. :)
I still can't wrap my head around the fact that our beautiful, smart, precious little boy has this horrible debilitating disease!! Please continue to pray for Will's health, for Lauren's as well and to give us all the strength to cope with this everyday. Also, please pray that Will gets accepted in the trial study Epi-743. This trial medication has the capability to slow down the progression of Leigh's disease. Hopefully, if Will is accepted in the study, this will buy him time until a cure is found. Lots of prayers needed!! God bless you all!!
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| Will at his PT appointment. He loves this bike! I'm going to e-mail the company to see if they can send him one. |
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