Re: MERRF

[Guest guest]

My family doesn't have MERRF so I can't help you there, but wanted to

welcome you to the group. I am sure there are some members that do deal

with it here in the group.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

[Guest guest]

Hi

My name is JO and I have a 5 year old son who has MERRF. I have

had my blood tested and I have the same point mutation, so I guess I

have it too with no symptoms. My son was diagnosed when he was 3 with

a blood test, he does not have typical symptoms. He does not have any

seisures and has never had a muscle biopsy so we are not sure he has

ragged red fibers. has a speach delay, ataxia and we have now

been told he has hearing loss. I also have a 4year old son who has

never been tested. I don't know that I will be able to answer any

questions but I sure have gotten alot of great information from the

wonderful people in this group. I will look forward to hearing from

you.

Jo

>

>

> Hi everyone here,

> I'm from Holland(Europe).

> I have MERRF and I'm looking for people who have the same disease.

> I have 4 Kids and 3 of them also have the disease.

> My youngest daughter(14)heard last week that she has it in a very

> high percentage.

> It's life treatning for here.

> I have a lot of questions and I hope somebody can help me.

> Thanks Marjon