Please help Alice Simson who has been diagnosed with SMA, and is seeking drug treatment in Canada!
Canterbury
Alice is a 2.5 year old girl who has been diagnosed with Spinal Muscular Atrophy (SMA) which is a degenerative disorder with no known cure. Children diagnosed with SMA will likely lose the ability to walk and may also be affected by respiratory and orthopaedic issues for life such as chronic lung infections and scoliosis of the spine. There is only one drug treatment available to those with SMA, globally. This drug is called Spinraza and it is not funded in New Zealand as Pharmac have decided to defer available funding of this drug for the foreseeable future. Spinraza is infused through the spinal fluid and essentially stops the progression of SMA getting worse! It is an essential treatment for these children. Only certain countries are funding Spinraza for children like Alice which means that Alice, her parents and her two brothers have left their home country of New Zealand for Canada to give Alice the opportunity of receiving this drug treatment. Without Spinraza, Alice's condition will only continue to deteriorate.
Angie and Rex are Alice's parents. They have sold their house is Wellington including all of their belongings, and have packed up their lives into 7 suitcases. They have only recently arrived in their new home of Ottawa, Canada - leaving behind their families, friends and established lives. Both the emotional and financial burden has been large, and I am starting this page to help in some small way, to alleviate these burdens.
Money donated would be spent on medical equipment for Alice and setting up their new home in Ottawa with all that that entails (mobility vehicle, furniture, cookware, bedding etc).
Every dollar will be accounted for and shared by Angie and Rex via progress summaries, so that everyone can see what their help has attributed to via a facebook page and SMA NZ official facebook page.
I am the Aunt of Alice and the sister of her mother, Angie whom have relocated to Canada from New Zealand to seek medical treatment for Alice’s SMA as the life-prolonging medicine Spinraza is not available in NZ.
Medical equipment - wheel chair, walking frame, mobility vehicle, setting up a new house and all that entails (furniture, bedding, cookware etc.). Surplus funds will be donated to SMA NZ to help petition for Spinraza to be made available in New Zealand.
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