Both my sisters have Char-cot Marie Tooth (CMT).

Miss_S_4

Here is a short letter I wrote please read it.


Hello I’m Sarah I am 25 from Bath, UK.
I have a sister Samantha (23) and a sister Scarlett(15)
Both my sisters have has a rare incurable neuromuscular disease called Char-cot Marie Tooth (CMT).
They both have severe muscle wasting to both the upper and lower legs, they both have considerable mobility difficulties,
finding walking any distance difficult and painful.


Scarlett also has Scoliosis (Curvature of the Spine), hip pain and a stiff heart.
Because Scarlett's heart does not relax properly she is not able to have an operation to correct her spine.
So all we can do now is supply comfort aids for her to keep her a comfortable as possible.
Scarlett's spine curves at a 108 degree angle and her ribs are sitting on her pelvis.








Samantha is a mum of 2 and has CMT with respiratory failure and the doctors
have told her that her respiratory system could stop working
any day.
It takes a lot of effort for Samantha to complete
day-to-day tasks so I and my mother are always on hand to support her.
Because Samantha's immune system is very week every time she gets a cold it
turns into a chest infection, Every chest infection she has her lungs are get weaker.
At the present time she is getting a chest infection roughly every month.


Both Sam and Scarlett are on Bi-pap a machine to help push air into there lungs.
They live every day in pain and all we can do now is supply them with comfort aids to help there every day lives.

A few things i would like help with is....

A name? based on the info i have given i need a name for my charity.

Fund raising ideas? We are in the middle of putting together a chairty concert but and other ideas will be a big help.

Thank you

savemoney

My daughter has cmt she has trouble walking for long and frequently falls due to poor balance, her condition will get worse with age she has type 1a the most common I believe

Sorry to hear about your sisters as you know its hereditary

She is a member of cmt charity and they also on facebook

savemoney

Just a thought but Scarlet being under 19 may be able to apply to family fund for certain things like holidays driving lessons, white goods etc

Miss_S_4

savemoney wrote: »

My daughter has cmt she has trouble walking for long and frequently falls due to poor balance, her condition will get worse with age she has type 1a the most common I believe

Sorry to hear about your sisters as you know its hereditary

She is a member of cmt charity and they also on facebook

Yes we are members of prob all of them thanks

Miss_S_4

savemoney wrote: »

Just a thought but Scarlet being under 19 may be able to apply to family fund for certain things like holidays driving lessons, white goods etc

Thank you, she has alreay done the family fund and make a wish

Miss_S_4

savemoney wrote: »

My daughter has cmt she has trouble walking for long and frequently falls due to poor balance, her condition will get worse with age she has type 1a the most common I believe

Sorry to hear about your sisters as you know its hereditary

She is a member of cmt charity and they also on facebook

CMT is very hard to live with especially as people get older.
Yes we know it is hereditary my dad died from it 15 years ago.
We are all fearing for our children (as i can be a carrier of the gene)
Thats why we are all trying to bring awareness of CMT cuz it is still very uncommon.

savemoney

I wish your sisters best of luck truly I do.

My daughters problems only started when she was around 14 just over 5 years ago although I have long suspected something wasnt right. As a baby she arched her feet a lot and had problems swollen and was hospitalised when she was a few months old. She had her feet done when she was around 12. She still takes ages to eat and frequently falls sometimes people push her at college or like last week old bag pushed by her in supermarket and almost feel, she cant move fast

I do worry for her future as she relies on us even at 19 to support her her

Best wishes

Miss_S wrote: »

CMT is very hard to live with especially as people get older.
Yes we know it is hereditary my dad died from it 15 years ago.
We are all fearing for our children (as i can be a carrier of the gene)
Thats why we are all trying to bring awareness of CMT cuz it is still very uncommon.

jazzypinkpuppet

Ah I am really sorry to read about your sisters, I for one had never heard of this condition but thanks to you now I have.

I recently held a funday for my friends little girl. I contacted lots of local places like farms, health spas, hairdressers, theatres etc to donate prizes for an auction. This alone raised nearly £800. We asked a local church to hire the hall for free and all other things, time and prizes were donated. The whole day raised £1800 with no outlay.

We also held coffee mornings and dinner parties, a quiz night, a sponsored walk, and some lads at work did sponsored leg wax etc.

I wish you luck in your fundraising efforts, it is hard work and very time consuming but so worth it when you are counting out the pennies.

vikki_louise

Are you wanting to set up a charity yourself (that's what I assume you meant by needing a name), would it be to help your sisters or people with similar problems. If your younger sister would like some 'happy post' then contact https://www.postpals.co.uk