Monday, July 25, 2011

Thank you.

Well, I thought I'd start this blog with the email (below) we sent out on July 5, 2011 and to say thank you. We've learned a lot more since that day so some of this might be irrelevant as we go, but it's a good starting place. Thank you all for the amazing emails, prayers and support we've received in the past few weeks.

My hope is that this blog will bring greater awareness to more people on mitochondrial disorders and hopefully one day, parents won't have to experience what Neil and I are going through right now - Actually, I won't limit that to parents, because I know our families and friends are grieving too.
- Lori

Friends and Family,
A little less than a year ago we discovered that Will had some physical delays. Since then we've been on a "medical journey" to discover what and why. It's with extremely heavy hearts that we send this email. Will has been diagnosed with Leigh's Disease's_disease. It's an extremely rare disease in the mitochondrial spectrum and there is no cure. While the doctor can't predict the future, it's likely Will is not going to live past early teenager years - if that. Additionally, it's a genetic "mutation" and it's highly likely that any other biological child would have the same disease. Our doctor is a mitochrondial specialist and highly regarded - so we're in good hands.

It's a progressive disease and the doctor said basically Will could get sick with the flu or a fever etc. and his body won't recover. That could be considered the "onset" of the disease. So essentially, he has the disease and once the symptoms arrive, it's likely a year or less for our little buddy. Right now, he's running around the house yelling "mine" and getting excessive kisses and hugs from mom and dad today.

This is extremely hard to reconcile in our heads because during the past year, he has continued to make some wonderful progress. His walking is just non-stop, moved up to the next class at school and is full of energy, life and joy. He's been putting together more 3 word combinations etc.

There is a clinical trail we're looking into at Stanford and some various supplements that will help, but again no cure and no way to stop this. This is all very new and raw for us and so I hope you can understand why we are emailing. We didn't want to run into someone and have to explain some of this in person as it's obviously very emotional. We have already decided that we will NOT allow Will to live in some sort of pity-filled environment. Extra hugs and kisses are a necessary item but we will raise him just as we originally planned. We hope you join us by not treating him any differently.

There really isn't anything we can do other than pray and enjoy every moment we have with Will and appreciate all the joy and happiness he brings. We appreciate all your support. We plan on joining the If you're so inclined, there is an option to support the association as well.

With love,
Neil, Lori & Will

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