Helping 6yr old Samuel live the best life with a terminal illness
Canterbury
When Samuel was 16months old he was fitted with his first wheelchair. Little did we know at the time this would be the first of many!
Samuel has Duchenne’s Muscular Dystrophy (DMD), BUT where most boys with DMD are in their teens before they end up in wheelchairs and on breathing machines, Samuel is only 6 and on a BIPAP for breathing and in a wheelchair almost full time, plus he has a permanent mic key feeding tube in his tummy as his muscles are now so weak his body can not function like it should so eating to sustain himself is not possible. Tube feeding keeps Samuel alive.
Samuel has a brother and 2 sisters. Dad works long hours often away from home, Samuels older brother has special needs and me, well I work full time plus more parenting my beautiful children. With the appointments, therapy and care routines for Samuel it’s impossible for me to work. (Samuel requires monitoring through the night, sleep in our house is minimal).
I am his mother and we will do all we can to give him what he needs
Funds will be used to get Samuel to appointments, hospital parking, extra power costs, petrol, and equipment that’s not funded
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