Re: Mother needs help for son with CMT

[Guest guest]

Donna ,

Can your son live with you while you search for some answers???

Geri

[Guest guest]

Goodwill, Catholic Charities, Independent Living????

[Guest guest]

Sorry all, I did not realize that photos would not come through on here. I

posted Tom's photos on the website in my album named " Donna in Indy "

[Guest guest]

Hi! Donna,

The first thing I'm going to tell you: do not worry so much about what tommorrow

may bring. Concentrate first on what today is presenting. I'm a mom also and I

know how you feel. My only child, a 3 years old boy also have severe CMT. I'm

married but my husband couln't understand what I was dealing with, having CMT

myself.

First I don't think that Family Court will require your son to pay child support

if he is disabled and can't not work. Second, I

don't know if you live here in New York, sorry but I'm new to the

group and I don't know how it really works, if we are from all over or

if everybody is from New York, if you are from here call 311 for

support regarding food and housing and tell then your situation or if

you are from another State I'm sure you city have a help line for

their people that will be able to provide a helpfull information to

you.

Now, I have to leave you because I need to get ready to go to

work but I want to get back to you some other time, just take care

and do not worry so much. Things should get better.

[Guest guest]

Donna,

I don't have any answers for you as of now, but I am trying to brainstorm. Just

wanted to let you know that this really touched me and I am praying for you and

your son that things will turn around. Is there a religious organization you

belong to that you can appeal to, such as your church or synogogue? (I am sure

you have already thought of this)

I do some background investigations for a very influential public person

(although I do it as 3rd party, so she does not know me), so I am trying to

think how I can appeal to this person.

Jackie

[Guest guest]

Hi Donna,

Have you also sent your story to your local newspaper? I know where I live

there has been times over the years where a family has posted their situation

and the public response was amazing. Organizations/individuals held golf

tournaments and such and all the proceeds benefited the family.

On another note, you son's legs/feet look exactly like what my son's foot did

prior to surgery. After your son gets through this financial difficulty, he may

want to look into corrective surgery. I'm sure an experienced orthopedic doc

who understands CMT could help him.

I will keep you and your son in my prayers.

Carmella

[Guest guest]

Geri,

I talked to him about that the other day, (even went out and bought a bed to put

in the back bedroom, and he refuses, just hoping she'll come back home, plus the

fact he still wants the daughters to be able to be with him at home, because she

will come back long enough to bring the girls to him. He is lost without the 2

little ones, and has always been a Dad that feeds, bathes, and changes diapers.

Plus the fact that I work 12 hour graveyard shifts and having CMT myself, MUST

get my rest and be able to sleep during the day.

So yes, I did offer.

Donna

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Yenney,

I am from Indiana.

Everyone on this group is from all over the US, and even other countries, which

is one reason why you will recieve a vast knowledge ond insight into CMT and

it's issues.

Donna in Indy.

[Guest guest]

Hi Donna, I had another thought. How about sending your letter and

the pics to all of your state congresspersons? Then follow-up with a

phone call about a week later. ~ Gretchen

http://www.visi.com/juan/congress/cgi-bin/newseek.cgi?

site=ctc & state=in

Residents of Indiana are represented in Congress by 2 Senators and 9

Representatives.

Member Name DC Phone DC FAX Electronic Correspondence

Senator G. Lugar (R- IN) 202-224-4814 202-228-0360

senator_lugar@...

Senator Evan Bayh (D- IN) 202-224-5623 202-228-1377

http://bayh.senate.gov/LegForm.htm

Representative J. Visclosky (D - 01) 202-225-2461 202-225-2493

http://www.house.gov/writerep/

Representative Joe Donnelly (D - 02) 202-225-3915 202-225-6798

http://donnelly.house.gov/issue_subscribe.shtml

Representative Mark Souder (R - 03) 202-225-4436 202-225-3479

http://souder.house.gov/index.cfm?FuseAction=Contact.ContactForm

Representative E. Buyer (R - 04) 202-225-5037 202-225-2267

http://www.house.gov/writerep/

Representative Dan Burton (R - 05) 202-225-2276 202-225-0016

http://www.house.gov/burton/zipauth.htm

Representative Mike Pence (R - 06) 202-225-3021 202-225-3382

http://www.house.gov/formpence/IMA/contact.htm

Representative Andre Carson (D - 07) 202-225-4011 202-225-5633

None Currently Available

Representative Brad Ellsworth (D - 08) 202-225-4636 202-225-3284

http://www.ellsworth.house.gov/index.php? option=com_content &

task=view & id=126 & Itemid=

Representative Baron P. Hill (D - 09) 202-225-5315 202-226-6866

http://baronhill.house.gov/IMA/issue_subscribe.shtml

[Guest guest]

Donna,

I have taken your story and emailed it to my friends and family to see if they

can brainstorm also for ways to help. I do have a lot of smart and charitable

people in my network that can maybe forward your story and help. Try not to

worry and know that when things seem the worst is when they start to turn around

and great things can happen.

Take care,

Jackie

[Guest guest]

Donna,

I'm going through it too!

So glad to hear you offered..my son is living with Russ (my partner) and I. My

son also had some bad luck but had no children by this marriage. Put in his

heart, soul, money, and helped her with her child for ten years.

He ended up here, a broken person in more ways then one..she had the underage

child!!!He is working and wounds are healing slowly..I know he is lonely and

liked being married.

I will also try to think of things that might help...you are both in my

prayers..it's so sad to have see our kids hurting..

Blessings

Geri

[Guest guest]

Thank you for that Jackie. Believe me I am brainstorming too.

Donna in Indy.

[Guest guest]

OMG Gretchen, how do you come up with all this info & contacts?

I will do just that.

Thank You again.

Donna in Indy.

[Guest guest]

That was very nice of you Jackie.

So far I have heard nothing back from any of the local news stations here or

anyone else, but, I'll be the first to admit that patience is not my best

quality right now. LOL

Donna in Indy.

[Guest guest]

Hello, Donna

Please receive my apology,I din't mean in any way to offend you.What

I really meant was to share with you so that you don't fell alone:

that I'm going through a similar situation. I'm along reaising my

child, having myself CMT and other medical problems, in a middle of

a difficult economical situation, where I find myself by the day I

receive my pay from work I already owen more than what I'm receiving.

I'm sorry that your son is having this problem I hope everything goes

well soon.

Take care!

Yenny

[Guest guest]

Donna,

Here is the first respons back from someone:

Tell them to contact their senators office because they have employees that

handle SSDI issues and they probably will have the name of a social security

disability advocate. Have a friend of his take the lead and contact social

security 1-800-772-1213.

I do have another friend who has done TV productions on raising awareness for

autism and she is going to send email to some of her friends in the insurance

business. Will let you know what they come up with.

Jackie

[Guest guest]

Donna,

Hang in there; things will work out. I know that sounds trite but people do

respond to these kinds of situations.

Jackie

[Guest guest]

Hi Donna,

After re-reading your posts, I am wondering which newspapers you

contacted, as I see you referring to 'news stations'. Here is a list of

ALL the newspapers in your state, and if you haven't done so, maybe

send your letter and photos to ALL of them.

http://www.50states.com/news/indiana.htm

Gretchen

[Guest guest]

Sorry to hear that Geri, at least yours agreed to come stay with you.

Does your son also have CMT? I have 3 children, and only Tom is affected.

Donna in Indy

[Guest guest]

Yenney,

I'm not sure what your apologizing for, but theres no need to . You did not

offend me in any way.

I also have raised 3 children alone with CMT, and you're right. It's finacially,

emotionally, and physically draining.

Hope the best.

Donna in Indy

[Guest guest]

Ok Gretchen, I'll try that.

I was refering to the 3 main local TV news stations that we watch here in Indy.

I had sent my email and photos to the news anchors that primarily cover health

issues.

One of them wrote back today and told me the only advice she could offer would

be to try going to the banks. I know that here in Indy for example,when people

loose everything due to a house fire, these TV stations will announce that a

fund has been set up for the family, and where to send donations. That's why I

chose to email them.

I will try sending it to all of the other links that you have sent me also.

Thank You Gretchen

Donna in Indy

[Guest guest]

Thank you very much Jackie.

You & Gretchen have been wonderful with advice and help. I wish I had the chance

to meet you both. You both seem to have resources & advice I couldn't dream

up.

Appreciation to both of you.

Donna in Indy

[Guest guest]

Donna in Indy,

I think my son has a very slight touch of it and my daughter, Granddaughter as

well as my G Grandson has CMT.(me too)My dad had CMT as well as " Many " on that

side of the family.I'm glad my son is here and I can give him a place to hang

his head, some days are not easy...falls into depression and along with that

comes bad moods as well as not having enough money don't help...now the times

worse then ever with the cost of everything. Russ and I are both disabled and

have very little to live on.

I feel so bad for your son, I know how depressed he must be.

Geri in Minnesota

[Guest guest]

Great news!!!!!

My son Tom got a call from SS today telling him he was approved!

Gretchen, I took your advice and wrote every Senator here in Indiana.

I sent pictures of his feet and a detailed description of CMT.

Senator Evan Bayh got involved, and BAM he was approved.

I would recommend that anyone with CMT waiting for the SS process to play out,

write to their local Senators and Congressmen asking for help.

All Senator Bayh asked for was any Dr.'s statements Tom could provide to him

that SS already had or didn't have.

I can't believe this happened so quick

Thanks for all your help Gretchen.

Donna in Indy

[Guest guest]

Wow, Donna, such good news for Tom! YAY! I'm so happy to know Sen. Bayh

was able to help. Nothing like lighting a fire under a butt to get

desired results!

Gretchen