OTHERS

Elijahs CMT Journey

Muscular Dystrophy

Charlotte Hardingham

How i cope living with cmt disease

Hi, my name is Elijah Armes, I'm 5 years old and in year one at school. I enjoy my life to the fullest. I love singing, dancing and playing with my toys. I especially love my Megazord. I have inherited a progressive neurological condition which causes muscle wastage from my mother, it is called CMT disease. My type of CMT is extremely rare as it comes from a genetic defect in the MORC2 gene. As CMT disease is a progressive neurological disability, it will worsen over time. At the minute, it affects my walking and balance. I fall over a lot, so I have to wear splints to help with this. I'm very lucky I can't get off the floor very well so my school has me on my own special chair. I get very tired as I have to physically work harder to achieve things and keep up with others. I use a wheelchair when I have to walk as I cannot walk far.

"I may have CMT but it doesn't have me!"

My type of CMT has caused me to have mild learning difficulties. I have attention deficit disorder and it took me a while to talk but I cope very well with this. I may have a physical disability but I have a very positive outlook on life. I share my disability with my mummy I love her to bits. I think she has passed on her positive attitude on to me. I never complain even though I have pain in my legs. I am always playing with my friends and join in every game. My favourite thing to do is dance. I love to dance to the song "Shake It." I always have a smile on my face. I love to make people laugh whether I'm always making a silly joke or action. I think laughter is better than sadness. I know in the future I may have to have surgery and other things performed medically to help me. But I will cope how I always do with my amazingly positive attitude. Our positive moto is "I may have CMT but it doesn't have me!!"

My IG: elijahs_cmt_journey

My crowd funding page: https://www.gofundme.com/elijahs-cmt-journey

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