Time to throw a hail mary

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Permalink Reply by Kati on March 19, 2009 at 12:56pm

Sorry to hear about your little girl. I havent heard of this type of ataxia as mine didnt start until my thirties.

Does anyone else know anything?

Kati

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Permalink Reply by Patsy on March 20, 2009 at 4:04am

Ah bless - sorry I cannot be of help Dave - just want to say my prayers are with you. With love, Patsy x

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Permalink Reply by Natalie on March 21, 2009 at 9:49pm

Dave,
I am so sorry, I hate this for you. What are they doing for her?
Are they doing anything to help? Pain management? Any sort of therapy, meds anything?
We are praying for you all.
Natalie -MAMA

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Permalink Reply by Dave Doroskewicz on March 21, 2009 at 10:33pm

hey mama she is not in any pain she is constatanly monitered for any changes she has a trake and the breathing machine is at 40% to keep her o2 level in the 90,s she has a chest tube on both sides.she has a GJ TUBE IN HER BELLY FOR FEEDING ,CUZ SHE CANT TOLLERATE ANYTHING IN HEWR STYOMACH it sounds like a lot but she is very cumfortable everybody knows her the nurses argue over her to be her nurse for the day we take alot of pictures and video of her and she is never alone. we aren,t doing other than preventive medicine to her cuz the doc,s dont know what can help i readn alot on line and e-mail alot asking ? but nobody responds last week wer had a meeting with everbody and well its about qualty of life.God damn i hate sitting their staring at her watching her sleep im so unbelievablely fusterated not being able to do anything,it kills me cuz im a fixer i like rebuilding things and fixing things and i can only sit there i wish somebody would figure something out with stem cells already cuz when they were born i had their cord blood stored so i have that little bit of hope to hang on to.keep us in your prayers. DAVE

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Permalink Reply by Sara McArthur on March 22, 2009 at 9:29am

Hi Dave,

There's one thing worse than having this disease youself and that is when one of your kids have it. I pray that my daughters don't get what I have. This scares me to death.

I wish I could say something that would make it better but I can't. Is SCA7 a disease that's inherited? Now that the band on stem cells has been lifted, the answer could be there as you pointed out.

My thoughts are with you.

Sara

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Permalink Reply by Dave Doroskewicz on March 22, 2009 at 9:30pm

yes it is inharited my younger sister and i got it from my dad

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Permalink Reply by kat nd surjsca7 on January 26, 2012 at 2:09pm

Im sorry to hear that our son had infantile sca7  ,you have to be stromg for one another thoughts are with you take care

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