CMT Family and Fund Raising

[Guest guest]

Good morning all. For those in the US I hope you are having a great long

weekend.

Well its been awhile since I posted about the kids. For some of the people that

have been around awhile you know in the past I struggled with possibly passing

on CMT to my children. There was a time when I was in denial. Then there was

the scared side of it all. I did not want them to have it, because I was scared

for them and how they would grow up with friends and such. Growing up had its

rough spots thats for sure. Always coming in last and not being able to do

things that other kids do gets really frustrating.

This winter was tough as I had what I hope to be my final struggle with this.

There was a lot going on, my son is in grade 2 this year and neat printing is

becoming an issue for him. Not so much for us or his teacher and us but for

him. It frustrates him when he is trying and its just not working, again

another communication issue so it has further reaching impact. Just like the

mumbling when he talks. I know I do it too, its the frustration of having to

say things multiple times and then still not have people understand you.

Its worse later in the day when we are tired. Then watching my daughter in pain

at night when she goes to bed, is tough as well. I have gotten more use to this

one since it has been going on longer but helping her through the really bad

episodes is tough on both of us.

So, between this with the kids and other family stuff with an aging mother's on

my side and my wife's side of the family its been a rough year already. My

mother in law just had her 3rd stroke in the last 4-5 months and is of course

getting worse with each one. We are lucky she pulled through this last one, and

we are thanking god each day

Anyways, the good news is we are all seeing my Neurologist in July. I got

refferals for 2 out of my 3 children as my youngest god bless his heart and body

for sure does not have it. Its fairly easy at this point to be able to tell

the difference between the 3 of them. I will be glad to know 100% if they have

it since now I am on the positive side of all this and I can help them and

myself.

My most darling wife said to me one day which was the tuning point, " I thought

you were happy the day you found out you had CMT? " I told her that was true. I

was so glad when I found out at 33 years old because it explained why I was the

way I am now and in the past. She then said " don't you think they would like to

know that too? " I said I guess, I never really looked at it that way for them.

This was a huge turning point for me. I don't think she realized what she

really has done for me, and I love her so much for that.

I don't think I would be where I am without her making that comment that day.

Family support is so huge when you have a disease like CMT.

I thank god some days for this group of people as many of you have touched my

life in so many ways over the years. I have taken your advice, just took me

longer to get there :-). Thank you to all here and may we all be strong with

our CMT. Now that I am on this side of the fence, I want to do as much as I can

to help and .

I am starting by trying to support fund raising and awareness for CMT. There is

a local Walk for Muscular Dystrophy in my area of Canada that I have signed up.

I have spoken to the MDA and they are going to channel the funds to the

Peripheral Diseases bucket of fund raising.

Gretchen, I hope this is ok, if not please remove, but I would like to ask all

my fellow Canadians for sponsorship for the walk. The walk it being held in

Hamilton on June 13th and they issue tax receipt for online donations for any

amount. I have reach 37% of my $500 goal so far. Anyhing you could donate

would be great. You can donate online at

http://my.e2rm.com/personalPage.aspx?SID=2569400 if you wish.

Thanks all

(Canada - Ontario)