Parent Fundraising for their child's Disease

February 16, 1999

I borrowed the following html from the Our-Kids List--I think it applies to

all of us who are battling our child's, or our disease, syndrome, disability,

etc. This family even made 60-Minutes a few months ago. I have not found out

the outcomes of the genetic transplant. What really galled me was that the

doctor from UCLA that was shown as helping to set the CA family up with the

researchers is the same one that told me that Staci will always be 6 months

old, just take her home and love her, just keep her comfortable and happy.

Don't push her with high expectations of improving--don't try many therapies,

etc. He didn't know what she had, but I would have to live with it. I never

would believe to be actually GLAD to find out that she has a devastating

disorder, Mitochondrial Disorder, probable MELAS, that might prove fatal

before she is out of her teens. Of course, the doc that sent me to the

renound diagnostician at UCLA did tell me that he didn't know what she has,

but kids who have what she has usually die before they are 12. He also

refused to give her the diagnosis-translate that as label that gets her

services-of Cerebral Palsy. Well--Staci does have Mito--probable MELAS--is

having cataract surgery this Fri. if her cold\ear infection clears up------and

enjoy this GREAT article. I feel it affects the gamut of different

disorders--there's always more to be learned. Here's to treatment!!

Take care of yourself--so you can take care of those you love.

Blessings--kate.e

& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & &

This website has an article about a family who personally has raised funds

for Batten disease research and that seems to be leading to something with

big potential. Just goes to show the power of one.

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