Please help my granddaughter
Hello
As a concerned grandparent, I have been on a mission for the last month to get as many people as possible to sign the above petition - for funding a miracle drug, Spinraza, for Spinal Muscular Atrophy (SMA) in New Zealand.
SMA is the childhood version of Motor Neurone Disease and is the leading genetic killer of children under 2. One in every 10,000 babies born have SMA - and there are approximately 25 of these children in New Zealand.
My granddaughter, Natalie, was brought up in Kiwi Road and Seacliffe Avenue, went to Belmont and Bayswater Kindy and Vauxhall School. She has SMA and is currently living in Australia, where they started funding the drug last year. She finished the loading doses just before Christmas, and she is now able to do small things like lifting a cup, which she couldn’t do previously. More importantly, if continued, it will give her a normal lifespan.
Natalie wishes to return to New Zealand to study engineering at Auckland University but SPINRAZA IS NOT FUNDED IN NEW ZEALAND. If Pharmac don’t agree to start funding it in the next 18 months, Natalie will not be able to return without literally risking her life.
This is not for a drug we hope will work... it’s a drug that is proven to work. I am not asking you to do this just for Natalie. It is vital for the SMA community as a whole that funding is granted urgently. Miracles have been happening to children in America, Australia and most of Europe.
If you could take 2 minutes to sign the petition, I would be extremely grateful, and it would be a massive help if you could share this with others. We have until the 9th of April to get as many signatures as possible!
www.parliament.nz...
Thank you
Judy Lawrence
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