childhood CMT

[Guest guest]

Hello in response to this letter,

In my own personal opinion I believe it is easier to find out that you have

CMT when you are a child

than when you are an adult. I went along in life not knowing what I had for

years. Then when I

was 28 I found out what I had. This was much more difficult finding out at 28

then when I was

a child. Seth, and (my middle son) both deal with their physical

challenge much better

than I did. Possibly it could be also individual how you cope with such a

grief process. Now that

I look back on it, I learned a great deal from my children and how to cope

with cmt. Yes , I also

believe children with physical or mental challenges are more empathetic

towards others as they

have seen the world through eyes of a much older person.

Thank you,

Heidi

Gretchen Glick wrote:

> Speaking for me personally, being diagnosed at age 10,I sure learned

> more about the world and people than school could ever teach. I had to

> learn to be a kid with CMT in a world without the ADA and IEPs, as MANY

> of us have done. I feel our young members have an advantage and special

> gifts non-CMT children do not have. I know just hearing from Seth,

> Marta, Liz and others, how mature and accepting they are already. CMT

> children ARE 'there' and from what I hear seeming doing quite well, in

> things like Scouts, school and outside activities. Great 'cues' for us

> oldtimers LOL ~ G

>

> Sharon Hauser wrote:

> The child has not even " been there " like we have, and now has to deal

> with this disease. At our age, it is something quite different as we

> lived our teenage years and forward, etc. etc.

>

>

> Foundation: http://www..org

>

>

[Guest guest]

Beautiful words Heidi and I know what you mean. This is so true. This is

one of the best lessons of my childhood CMT, looking back as an adult

now. I would never had got this far without the empathy I received. ~ G

Heidi Willey-Hersey wrote:

>Sympathy is enabling someone so they will not try and afford

> the opportunity to be who they really are. Empathy gives them the will power

and determination to love life

> no matter the trials and tribulations.

[Guest guest]

Deanna,

I was about 10 when I was officially diagnosed, but at age 7 the

teachers told my parents I was falling on the playground alot.

Walking home from school (about 1 mile) made me SO tired, Mom

noticed this too. Scout hikes of 3 miles also made me SO tired (but

I loved them)

So at the age of 7, I saw my first orthopedist; for 2 years then I

had 'toe braces' and orthopedic shoes.

The summer I turned 9, our family went on a vacation to the East,

seeing museums and historical sites, small towns, big cities. My

brother and I would walk together, in front of Mom and Dad, it was

here that my Mom saw how I was walking,(rolling feet inward) and

when we returned from that trip I saw orthopedist #2 who was the one

who diagnosed me.

So my early symptoms were falls, fatigue, and feet rolling.

~ Gretchen

[Guest guest]

I was around five also...my daughter, g.daughter, g.g.grandson.As well as all

families on my dad's side as well as my dad , his brother his boy and their

mother(my mother). all of us have shown early CMT. Told I had CMT2..but now they

aren't sure! Have an appointment this spring at MDA, perhaps I can find out.

Geri

[Guest guest]

I was around five also...my daughter, g.daughter, g.g.grandson.As well as all

families on my dad's side as well as my dad , his brother his boy and their

mother(my g. mother). all of us have shown early CMT. Told I had CMT2..but now

they aren't sure! Have an appointment this spring at MDA, perhaps I can find

out.

Geri