Child with Possible Leighs in Des Moines, IA

[Guest guest]

I wanted to ask you to pray for a couple and their infant

daughter (I believe)who I just learned about today. My girls' nurse

who does weekly routine checks told me she just met this couple with

a baby with severe hypotonicity that has a very poor prognosis. They

were told she will probably only live 2-4 more months. The only

movement the nurse has seen thus far was slight leg movements. She

just lays there and stares off into space. The nurse has been seeing

her for a while and it sounds like the parents just recently were

told the doctors think whe has leighs. They are planning to see Dr.

Whiteman at Mayo soon and probably begin hospice shortly. I am sure

this must be devestating news to them, especially being new parents,

as this is their first. I told our nurse to give them my name and

phone number as well as any information about our girls. It sounds

like they have also been given the UMDF website. Hopefully they will

pop in here to get support too.

The only good side is that it appears that our city, Des Moines,

is finally taking the metabolic disorders more seriously and looking

at them for diagnosis now. When we began looking for answers for

Asenath noone EVER mentioned Mito to us or to another Mtio family

which resides here in Des Moines. It took Mayo to get answers. But

now with Kim (from this list), the other family here in town, and us

all having Mito it seems the docs are taking note and looking closer

at Mito for diagnosing kids' isues. Hopefully more children can get

quicker answers in the future because of it!

Darla