Susan Rathfelder's Comments

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At 2:28pm on June 11, 2008, Jill Keenan said…
Just wanted to say good luck with the casting tomorrow and for the next few weeks. I hope that his feet are at least able to return to "neutral!" He has done so well so far and I bet this will be no different and be a huge success. Keep us informed--we will be cheering you on=)
At 1:33am on June 7, 2008, Jill Keenan said…
Wow!! Just read your bio and that is so awesome that your son is still walking at 17!! I can only hope that my son (he's 4) is still walking at 17! You must be so thrilled (but saddened, too) that he is only now beginning to use his chair more. So sad that we have to be "excited" over what most take for granted, isn't it? But since we have to live this life, I will bask in any "milestone" he breaks, i.e. prolonging the developement of contractures, lordis(sp?) scoliosis, heart complications, walking longer than doctors say he will--the whole gammet! I hope he breaks every "record" out there, which means others will too!!
At 11:35am on June 5, 2008, MicahsDaddy said…
Susan,

I saw ur comment on the deletions group. Give this company a try:

http://www.athenadiagnostics.com/content/test-catalog/
enter 181 as the keyword. it should give results automatically. if not, then press enter.

Notice the Special Notes section. If you want, click on the Order Test link and follow their instructions.

I have not personally used them, but have heard of others who are.

Hope this helps,

Christian
At 11:13am on June 5, 2008, cheryl cliff said…
Hi Susan,

We take our son to Univ of Utah for DNA tests with Kevin Flanigan. It takes awhile to get the results but Flanigan is expert with DNA. Have you tried them yet? We live in Riverside, Ca and make sure Alexander (age 9.5) sees Dr Flanigan 2x's per year while dealing with the other care issues here locally. Personally, I think there are way too few DMD experts in the US, Flanigan being one of them. He can be difficult to communicate with at times but I don't think he intends to run his practice that way...it just happens sometimes.

Cheryl

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