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A chair for Alexis

Organized by: Chicha Bic Bruxelles

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THE STORY:

Who am I ?
My name is Alexis. I am 18 years old. I live in Saverne, Bas-Rhin, Christina with my mother, my stepfather Peter, Sister Laetitia 7 years old and my little brother Lucas 3 years. At the age of 5 years, doctors have diagnosed me with a rare genetic disease that causes progressive degeneration of all the muscles of the body: Duchenne muscular dystrophy. Today, I present a severe neurological disorder with consequences for impairment of motor function of all four limbs and trunk, major malformations as well as cardio-respiratory and digestive disorders. Unable to move or even to sit in a normal wheelchair, artificial respiration (tracheostomy), a gastric tube (gastrostomy) connected to my stomach, I am forced to spend my days in bed in my room for about a year .

My project?
Holder of a wheelchair since the age of 9, when I lost the way, I am now too big and too disabled to get into it. So here I am forced to lie in my bed This situation complicates my daily administration of medical care and other activities related to me. My family experienced such difficulties wash, cut my hair and nails and take care of me. Not to mention the pressure sores related to my capital. My project is to find a technical assistance that will respect my position, that is comfortable and allows the outputs. Following the passage of a therapist to my home, it is only technical assistance meets these criteria, it is a rolling chassis "TINA" kind. It consists of three separate sleeping plans, flexible and coated with a vacuum mattress composed of small polystyrene beads for positioning in full compliance with the physical constraints and physiology.

My project needs you! This equipment costs about 9,000 euros. My parents did not have the ability to pay. In September, an application was submitted to the departmental home Disability Bas-Rhin (MDPH) for funding. But the administration of the case should take about a year, say the services. Your help will allow me to finance it 100% "TINA" bed-chair without delay funds the MDPH. And so enjoy the last moments of my life, while making my family who watches over me easier. As for the former wheelchair unusable, will be given free of charge to a charity for people with disabilities. The chair will be funded thanks to you will also be given to someone who needs it when I no longer could live.

Thank you all for supporting my project.

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