March 25, 2010 at 12:01 pm


I applaud your effort on Emily’s behalf; I truly hope you are successful.

As someone who has been involved with Make-a-Wish for over twenty five years, I wanted to mention a couple of things: First…criteria. MAW’s criteria states that children nominated must be between 2 1/2 and 18 and have a “life-threatening” illness. I would imagine this is partially responsible for their “denial”. While CIDP is a horrible illness, and is no-doubt effecting her “quality of life”, a doctor or specialist would, I imagine, have to certify that it is threatening her life. The other thing is, basically, demand. MAW receives MILLIONS of requests every year, and, obviously, can’t support every request. While we all wish we could, it simply can’t happen because of limited resources.

I AM NOT speaking for MAW, and am in no way authorized to speak for them, but as I said, I’ve been involved since “almost” their inception, and wanted to offer a little perspective. I became involved when my cousin’s daughter, Sara, was born with Spinal Muscular Atrophy. “Most” children born with that horrible disease do not live to see their first birthday; Sara lived to age 16!! She is, I believe, the longest living patient known to be born with SMA, in history. MAW granted her wish, and it was a wonderful experience for her and her family. After that, I chose to stay involved, helping on many different levels in my local community with fund-raisers, etc. It is a WONDERFUL organization.

As I said, I truly hope and pray you can get the results you’re looking for; I will send an e-mail, as will my wife, in support of your effort. I will also make a suggestion: I would support, as I believe others here and elsewhere would, an effort to grant Emily’s wish, seperate from MAW. If such an effort were started, my wife and I would donate $100. I cannot imagine ANY child having to suffer the effects of CIDP. [B][I]There is a ministry opportunity for you, Gary[/I][/B]…start a foundation, or get someone else to start a foundation, to support children and their families who have many of the neuropathic disorders that aren’t “well-known”. We all know about MDA; look at what an effect one man’s effort has had on that. What about the hundreds of other neurological disorders that disrupt children’s lives, keeping them from having the same childhood experiences others enjoy?

Emily, and this effort, are in our prayers! Good luck, and please keep us posted on how we can help.