Charcot-Marie-Tooth Disease (CMT)

Poppycat

My 14 year old daughter was recently diagnosed with this. CMT is a condition that effects the nerves particularly the legs and arms. My daughter suffers from poor balance, poor coordination and is prone to the cold particularly hands and feet. She gets very tired easily mainly due to the way she walks.

Its difficult to diagnose hence why we have only just found out as it seems to appear more profound when children are maturing. Unfortunately there's a 50/50 chance that this can be passed onto off spring.

http://www.cmt.org.uk/

Registered charity number 1112370 Company number 0557485

I am not connected to the charity at all

I do some charity work for our local dial a ride service, by volunteering my time to helps others particularly elderly or

Poppycat

Reg Charity No. 1112370

The CMT web site has a number of ways of making money if anyone can help.

http://buy.at/cmtuk

They have donated £6000, which represents most of there research funds - to assist with a clinical trial of Vitamin C, based at the National Hospital for Neurology and Neurosurgery.

They have a donate page
http://www.cmt.org.uk/index.php?option=com_content&task=view&id=101&Itemid=137

And even a EBay shop should anyone kindly donate to them goods

http://www.cmt.org.uk/index.php?option=com_content&task=view&id=225&Itemid=258

Thanks


If you have some spare time please visit the links in my sig I also have them in my profile.

Poppycat

If anyone can support this charity it would be most appreciated.

I hadn't heard of CMT 6 months, yet my daughter almost 15 has it, she has had problems walking, swolling etc most of her life, as she is maturing her condition is getting worse.

Its a rare condition and one sadly there is no cure as yet. Money raised helps vital support for parents and they give money for funding research.

I have just returned from Leeds hospital to see whether she can have a hip operation but it doesn't look good, I am upset about this, and she may pass on this to her off spring.

If anyone can help this charity please see links above, whether is a sponsorship, or any other way. Thanks

robjak

my partner has this rare disease.
who knows what the future holds, but theres always hope.
he's 43 and happy when hes moaning just like most men, and i love him to bits !!!!!!!!!!!!!!!!:D

vikki_louise

hiya, if your daughter would like to email another teenager with cmt then you can via here http://www.postpals.co.uk/pals/Anna-Mae+C

edited as I put the link to Anna Mae's page incorrectly

hermum

vikki_louise wrote: »

hiya, if your daughter would like to email another teenager with cmt then you can via here www.postpals.co.uk/pals/anna+mae+c

Good God, that puts most of our problems into perspective. My thoughts are with those & all the other children in similar situations & their families.

Poppycat

Just bump this up thanks for the comments


If you can support then via shopping via Amazon for example very few cashback web sites use Amazon now


My daughter suffers a deceases which gets worse with age HERE

http://www.easyfundraising.org.uk/good-causes/cmt/

She just had a nasty fall today and had to be sent home when she was at college. Just want to say there is known cure for this it all started when she was in her early teens she is slower getting worse, poor balance, she had trouble swollering, walks with a stick, feels the cold

Thanks

Poppycat

Since my 1st post Kimberley now 19 has had operation on her right leg, she now walks with aid of a stick. She does get DLA which was hard to get despite her obvious walking problems.

Since a little baby we knew something wasnt right, she has been hospitalized when she was a baby for not eating and malnutrition. She always walked on tip too when normally you get out of that, she frequently sick and cold

We didnt get a properly diagnose until she was around 14 because its hard to diagnose. She has CMT type 1A

She has trouble walking far, cold even in Summer. She has poor balance coordination so is she stands still she wobbles and eventually falls. Often falls at college and school, had to be sent home today with fall on back of head due to her loosing her balance