The Emma Fund - Charcot Marie Tooth
Donation protected
My sweet Emma is 4 years old and was diagnosed with Charcot Marie Tooth Syndrome this earlier this year. She is such a sweet and bright little girl and is now noticing she isn't like the rest of her friends.
We never thought that her feet were effected until the doctor explained what CMT was. Charcot (shahr-KOH)-Marie-Tooth disease is a group of hereditary disorders that damage the nerves in your arms and legs (peripheral nerves).
I thought to myself, I've never heard of this before! This can't be happening - Shes perfect! It has been 6 months since her diagnosis and within that 6 months her feet and legs have changed rapidly.
2 years ago, Emma fell in our drive way and has had trouble walking since. After that fall we noticed she wasn’t able to keep her balance, run and her feet started to turn in. We just thought she was showing us she was the boss by walking and running her way... Emma will need to wear leg and foot braces to slow the process of the muscle weakness and foot deformity. She will require physical therapy and special attention in school.
The disease reduces muscles and decreases her muscle size. This limits the control you have over lifting your foot and walking normally. It also takes away all sensation in the affected areas.
The worst thing about CMT is that there isn't a cure. Emma will have to live with this her whole life and if it isn't treated aggressively it could spread from her feet into her legs, hips and hands.
The only option we have now for Emma is to get Orthopedic Devices to help her everyday mobility and to prevent injury. She has already almost broken her nose by just playing with her toys in her room.
Any help you can provide is greatly appreciated. I'm asking for help to make my daughters life just a little easier.
Please feel free to share.
We never thought that her feet were effected until the doctor explained what CMT was. Charcot (shahr-KOH)-Marie-Tooth disease is a group of hereditary disorders that damage the nerves in your arms and legs (peripheral nerves).
I thought to myself, I've never heard of this before! This can't be happening - Shes perfect! It has been 6 months since her diagnosis and within that 6 months her feet and legs have changed rapidly.
2 years ago, Emma fell in our drive way and has had trouble walking since. After that fall we noticed she wasn’t able to keep her balance, run and her feet started to turn in. We just thought she was showing us she was the boss by walking and running her way... Emma will need to wear leg and foot braces to slow the process of the muscle weakness and foot deformity. She will require physical therapy and special attention in school.
The disease reduces muscles and decreases her muscle size. This limits the control you have over lifting your foot and walking normally. It also takes away all sensation in the affected areas.
The worst thing about CMT is that there isn't a cure. Emma will have to live with this her whole life and if it isn't treated aggressively it could spread from her feet into her legs, hips and hands.
The only option we have now for Emma is to get Orthopedic Devices to help her everyday mobility and to prevent injury. She has already almost broken her nose by just playing with her toys in her room.
Any help you can provide is greatly appreciated. I'm asking for help to make my daughters life just a little easier.
Please feel free to share.
Organizer
Julia Wisby
Organizer
Long Beach, CA