Mother needs help for son with CMT

[Guest guest]

Hi all,

I have been conversing back and forth with Gretchen on this matter, and her

resourses and advice have been outstanding. With her

approval, I am posting this to the group.

I have sent this to news stations, and many other organizations,

State Reps, and a few of Marks contacts as well, and have informed them that any

donations made will be accounted for at request. Tom's situation just sickens

me, and I'm desperately reaching out to any and all who can help with advise,

links, resources, etc... The letter below is what I have emailed out along with

photos. I am aware that there may be many of you with CMT that are in worse

shape than he is, but I'm doing this because he is completely alone and has 2

small girls (3) & (7 months).........................................

The attached photo's are of my son who is 26 years old.

He has Charcot-Marie-Tooth Disease, also known as Peroneal Muscular

Atrophy. This is one of the most common inherited neurological

disorders, affecting approximately 1 in 2500 people in the United States. As you

can see, it affects and severely deforms the extremities furthest from the

spinal cord, (which are the feet, ankles, and hands. (Which I forgot to

photograph.) It is progressive, and results in muscle wasting, numbness, loss of

balance, and causes the feet, ankles and hands to become severely atrophied.

The MDA family supports 40 different types of neuromuscular diseases,

(CMT is one of those 40), by offering leg braces, wheel chairs, and

help with many other walking devices.

A few weeks ago he lost his job, due to the fact that he had been

working on a fractured ankle for 4 months (stubbornness to support his

family), and collapsed and can no longer work. He immediately went and

applied for disability, which does not happen over night.

The process and the wait can take up to 2 or 3 years, which I have

never understood how they can deny someone who has a proven (progressive,

INCURABLE) disease.

To make matters worse, last week his wife left him and said she was

not happy and didn't love him anymore.

He is absolutely devastated, severely depressed, and does not know

how he is going to pay rent, support his 2 daughters, pay the child

support she will most likely ask for, and just manage day to day expenses while

the ridiculous Social Security process plays out.

He went and applied for welfare, but was told that since they are

still legally married, and she is able bodied, then she can work to

support the family. She has left him with no vehicle, no phone, and I

am-worried sick, because in the last 6 months or so he has begun to fall down A

LOT!

I am writing in hopes that you may have some ideas as to how I could

get a fund set up for him, or some other options in order to

financially help him through the disability process?

I'm praying that maybe there are some major corporations out there

that might hear his story and offer to sponsor him just until the

disability process goes through, or maybe even someone that can step in and help

his cases be rushed through the disability process?

I also have this disease. I inherited it from my Mother, and

inherited from me. 26 years ago I had no idea what this disease was, and no idea

that I had passed it on to my son. I am 44 years old, and have trouble walking

myself, but my son is affected much more severely than I am, as this disease is

typically much worse in men than it is in women.

I have been a single Mom for 15 years now, and I'm still able to work

everyday in an office environment, as my hands are not nearly affected

the way his are. I have been able to pay my own bills all these years, but

afterwards there is absolutely nothing left to even try to help him pay his

also, or I would in a heartbeat.

I am not someone who is out here begging for money, I am a Mom who is

sickened by what I passed on to him, sickened as I watch him struggle

to walk from here to there without breaking something or falling, and

sickened to see the position he is now in with not knowing how he's

going to survive while the disability process takes it's time.

Any help, advice, or contacts you can give will be greatly

appreciated.

Thank you for listening

Donna .