Tolich had stumbled across a little known loophole in New Zealand's medicine rules, buried at the end of a highly technical Pharmac report - one of many the drug funding agency has produced over the three years it has been considering whether to fund the SMA drug. Well, It's not over, but she is reeling - and just when she thought she had finally found the key. She never expected her fight to end like this. As healthy as the kids on that list of names you drew up for your daughter's birthday party.įiona Tolich has made it her life's mission to make the SMA drug available in New Zealand - as it is in Australia and 56 other countries. There is a drug that vastly improves their condition - so much so that in trials nearly three-quarters of two year olds might look as healthy as the child who smiles at you from the screensaver on your cell phone. Without treatment those with the most serious form of SMA die before their second birthday. It's the most common cause of genetic death in infants. These kids are among about 35 New Zealand children with Spinal Muscular Atrophy (SMA), a severe, neurological condition which causes weakness and muscle wasting. "Please remove her photo from your files as her family will not want it included." "She is one of the children that tragically passed away," Tolich warns. Dress ups, a day at the zoo, a hospital bed. Toothy smiles, ice creams and days at the beach. Photos of Ivy and Olive and Heath and Logan. "I give permission for Tama (aged four) to be featured." Next comes permission for Liam, Skylah-Rose and Maia. Tama is smiling from his wheelchair, perched beside a water foundation. "I give permission for Lincoln (age: 2.5) and Harlan (age: 10 months) to be featured." The first photograph arrives by email at 5.21pm on Sunday. She needs permission from each family if their child's photo is to be included in this story. Then she tallies the names out loud, her count barely audible as her eyes run down the page. Photo: RNZ/Vinay Ranchhodįiona Tolich checks the list in her exercise book for a second time, making sure there's a blue tick beside each child's name. Samreet and Kulture, whose photos are marked with flowers and hearts, have passed away. Their families wanted to share their photos. These are some of the New Zealand children with SMA.
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