A Little More on Mattie - I Think It's Important To Read It All

June 24, 2004

As I know no one who has created more awareness to Mitochondrial Disease than

this valiant young man.

http://www.mdausa.org/news/040623mattie.html

Alice

June 24, 2004

>

> As I know no one who has created more awareness to Mitochondrial

Disease than this valiant young man.

>

> http://www.mdausa.org/news/040623mattie.html

>

> Alice

I just found this site tonight. The story about Mattie is very

touching and heartbreaking at the same time. My prayers go to his

mother and friends. I was diagnosed with adult onset mitochondrial

myopathy 2 months ago. I am 40 years old. I wish I could contact

Mattie's mother (Jeni) since she has adult onset mito disease and

ask her questions about herself as well as when her children became

ill. I have an 11 year old and a 17 year old. I am not sure if mine

is from nuclear DNA or mitochondrial DNA. I continue to worry about

whether I passed anything on to my children. Can someone please help

me?

Angie

June 25, 2004

Angie

Welcome to the group. I hope you can find information and support here.

I have adult on-set mito. Looking back, I can see that I had some mild

symptoms as a child, but it wasn't until after my children were born that my

symptoms became noticeable enough to cause concern. I too was diagnosed by

Dr. Shoffner after a 15 year search for answers.

My mom just passed away from mito and there are 7 others in the family with

it, as best to our knowledge. A specific mutation was not found in the

mtDNA, but ours is felt to be maternally transmitted. I understand your

concern for your children.

laurie

>

> Reply-To:

> Date: Fri, 25 Jun 2004 04:21:15 -0000

> To:

> Subject: Re: A Little More on Mattie - I Think It's Important To

> Read It All

>

>>

>> As I know no one who has created more awareness to Mitochondrial

> Disease than this valiant young man.

>>

>> http://www.mdausa.org/news/040623mattie.html

>>

>> Alice

>

> I just found this site tonight. The story about Mattie is very

> touching and heartbreaking at the same time. My prayers go to his

> mother and friends. I was diagnosed with adult onset mitochondrial

> myopathy 2 months ago. I am 40 years old. I wish I could contact

> Mattie's mother (Jeni) since she has adult onset mito disease and

> ask her questions about herself as well as when her children became

> ill. I have an 11 year old and a 17 year old. I am not sure if mine

> is from nuclear DNA or mitochondrial DNA. I continue to worry about

> whether I passed anything on to my children. Can someone please help

> me?

>

> Angie

>

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>

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>

June 26, 2004

I had just read about this wonderful young man only one day after he passed away

.... he had made such a great effort in helping raise money for research for this

disease ... and his poetry has deeply touched my heart and I can't wait to go

out and buy all of his books ... it is amazing all of the wonderful things that

he had accomplished in his short life ... and all while having this disease that

I have been so scared of finding out that I had ... his hope and optimisim has

given me a new outlook on what had been to me a diagnosis that took away my hope

for the future and now I am inspired by this intelligent young man to make the

best of what I have been given ... he did accomplish all of his goals ... to be

a poet ... to be a peacemaker ... and even to be a " daddy " to those who will be

born with this disease that will be able to be treated and even cured in the

future because of the message he sent out to the world ... what a remarkable

person he was and will always be ... my thoughts go out to his mother and those

who were close to him personally ...

~ Gwenni ~

Re: A Little More on Mattie - I Think It's Important To

Read It All