Genetic Results

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!!

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.

Lemonade Stand for Mito Research

Kasey's neighbors had a huge lemonade and cookie stand  last weekend to raise money for mitochondrial research. The kids had so much fun! They raised quite a bit of money for this worthwhile cause. What nice, caring neighbors they have!!

Here is the group of neighbor kids that helped with the lemonade stand. Will is in the middle with parents. So cute!!

Wonderful Will

Will was taken to the hospital today for an x-ray. He can't keep his feedings down for some reason. I pray it is a simple fix. Please pray for Will and the family. This is such a tough time for everyone. He is also complaining about his eyesight. Poor baby! He is so sweet and precious to everyone! All prayers needed and very much welcomed!