Nephews just diagnosed...

[Guest guest]

I have 20 month old identical twin nephews who have both been

diagnosed with mitochondrial myopathy. My brother just got back

from Atlanta last night with Josh, he apparently is the worst of the

two. The news is not good. The doctors say they don't think that

they will make it to 5. It just breaks my heart. They know the

boys are deaf but now they say they don't think they see all that

well either. The doctors say they don't even know who we are. Both

boys have seizures constantly and have basically no motor skills

whatsoever. They don't hold their heads up, they don't roll over,

they don't hold their own bottles. I am trying to research as much

as I can because honestly I don't know what else to do. Are there

support groups out there? Any information you could provide would

be SO appreciated. Thanks!!

[Guest guest]

Dear Auntie to 2 beautiful boys:

First of all, congratulations on being an aunt. how exciting. Above everything

else that is going on, i want you to know that having children in our lives is a

priceless gift, regardless of what role we play or what their special needs are.

You have found a great resource for support in all things related to

mitochondrial disorders. We are all in your boat. WE laugh together, celebrate

victories together, and grieve and cry and mourn together. Welcome. I'm glad

you've found us.

Next, let me just tell you that mito disorders show up differently in every

single person who has them. that can be a good thing, bc it doesnt' necessarily

mean that what happens to one child will happen to another. it can also be a

bad thing, though, bc we really don't have anything or anyone to compare our

children's situations to. So i guess the point of the story is that although we

gather information from each other and share ideas, not everything will apply to

your case.

And finally is that horrible spectre of prognosis. I am so sorry to hear that

yor nephews seem to be severely affected. It is unbelievably painful to hear

those words, telling you that our babies may not live to have long lives. I

have walked in your shoes and i know how terrifying it is. I wish there was a

way to make it easier. Just know that we are all here for any questions, vent

sessions, or emotional support you may need.

I hope you and your family will find solace here.

ruth

mito mom to Mitch (9 1/2) and Lexi 96 1/20, both mito affected and my treasures

[Guest guest]

Dear Hat Tricks girl..

I am so sorry about the problems that your nephews have! I am sorry

that they have received such difficult news and the mito diagnosis.

Bless your heart for researching for the family. Your nephews'

symptoms are different than my boys, but you'll find others with

similar symptoms. It is a difficult road and I'm really sorry for

your whole family. I know it has been hard for us. We'll try to

support you online, as well as the boys' parents, if they'd like to

join us. We don't always know answers, but we care and understand..

Cindy mom to Seth, 13, and Ben, 8, both mito.

> I have 20 month old identical twin nephews who have both been

> diagnosed with mitochondrial myopathy. My brother just got back

> from Atlanta last night with Josh, he apparently is the worst of

the

> two. The news is not good. The doctors say they don't think that

> they will make it to 5. It just breaks my heart. They know the

> boys are deaf but now they say they don't think they see all that

> well either. The doctors say they don't even know who we are.

Both

> boys have seizures constantly and have basically no motor skills

> whatsoever. They don't hold their heads up, they don't roll over,

> they don't hold their own bottles. I am trying to research as much

> as I can because honestly I don't know what else to do. Are there

> support groups out there? Any information you could provide would

> be SO appreciated. Thanks!!