Re: Kim S

[Guest guest]

I am not much help here. I didn't ask what all conditions they qualify

for. At the time we did Asenath's wish we thought they only provided wishes

with kids most likely to not live past 18, and with Asenath's Mito plus her

Vasculitis, there was no problem getting her wish. Hopefully the others in

the group has more info for you.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: wishes granted

>

> Also you might inform your genetics doc that MAW is trying to change

> their image and they no longer just grant wishes for children with

> terminal illnesses...but children with chronic illnesses which surely he

> has.

>

> Darla,

> I was wondering about this,,do you know what kinds of illnesses MAW

> qualifies on ? Logan has been " officially " dx with failure to

> thrive,possible cerebral palsy,hypotonia,pectus excavatum,static

> ecephalopathy,and juvenile arthritis. He also carries the possible dx of

> mitochondrial disease,possible myopathy and/or a possible connective

> tissue disorder. I don't want to get a wish,if we don't qualify for

> it,,but on the other hand,I am so scared that he has something

> progressive,,and by the time he is dx,he will be wheelchair bound. As it

> is,he can't ride his new bike (with training wheels) that we got him for

> Christmas,for more than 5 minutes,because his legs get too tired,,but he

> used to be able to ride his tricycle with no problem.

> What do you think ? Also,Katelyn has bipolar and OCD,,and while it

> isn't really a life threatening illness,,it sure is life changing !

>

>

>

>

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>

> Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

> Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and

> Ethan 5 and 100 % BOY

> __________________________________________________

>