 Nancye Rewi wakes up not knowing what the day will bring.
Rewi is a stay-at-home mum - her youngest daughter Caydence, 2, has been diagnosed with an extremely rare genetic disorder called CDKL5. The disorder means Caydence suffers prolonged and difficult to control seizures, and severe neuro-developmental impairment. Nancye must carry Caydence everywhere, as she cannot talk or walk. Doctors have told Nancye she never will. There are only about eight children in New Zealand to have been diagnosed with CDKL5, and a few hundred worldwide. They first thought Caydence had epilepsy, until in July a diagnosis came from Starship Hospital. In May, staff captured the toddler having a seizure and performed genetic testing. "They just said 'she's got CDKL5, it's a genetic disorder, there's no cure, your child may not walk or talk'. "It feels like someone's dying, like you've lost someone. To hear that news, it shatters you," Nancye said. Her local doctor and specialist in Hawke's Bay had never heard of it before. Nancye had to do her own research, where she discovered cannabidiol (CBD) oil has been known to improve symptoms of CDKL5, particularly in reducing seizures. You can only purchase oils and medicines containing CBD in New Zealand if you have a prescription from the doctor. But because no medicine containing CBD is funded by Pharmac, it would be full price, not the discounted $5. But the family can't afford it. Their funds are already stretched. Rewi and her husband, Chappie, have three other daughters - Corbyn, 12, Carla, 10, and Chloe, 8. Chappie works tirelessly as an apprentice builder to bring home a pay cheque, but it doesn't go far. Pharmac's director of operations Lisa Williams said no application had demonstrated CBD "was the next best use of the public funds available for medicines". There was one registered medicine, Sativex, which contained cannabidiol, however a funding application for that was declined, Williams said. "We remain open minded to the outcome of ... future evaluations." The couple's community, Clive, has rallied around them. The local Four Square is running a lolly jar competition to guess how many pieces of candy are inside the container. All the funds raised will go towards Caydence's treatment. Down at the Zepplin Cafe, owner Micky Robertson offers refuge and hot coffee to Nancye, who cannot bear the thought of leaving Caydence unsupervised in a kindergarten. Robertson and her family, who run the cafe together, are thinking of organising a donation box to support the Rewis. Nancye has been in touch with other families in New Zealand affected by CDKL5. Some have been able to fly to Australia for specialist therapy, which helped their children be able to crawl, however the Rewis cannot afford that. A 2017 academic journal article, published in Orphanet Journal of Rare Diseases, was the first investigation into family life for those raising a child with CDKL5. It found almost two-thirds of the 192 children with CDKL5 suffered epileptic seizures on a daily basis, and only 21 per cent were able to walk independently. Caregivers of children with CDKL5 experienced "considerable" emotional burden, at levels worse than demonstrated in research of families with children who had Rett syndrome and Down syndrome. Health Minster David Clark said he understood concerns patients and their families were raising about accessing . "However, there are numerous factors to consider when introducing new drugs to the market." The Government respected the independence and impartiality of Pharmac, and it was not for politicians to "second guess the experts at Pharmac" about which drugs it purchased, he said. Nancye has set up a Givealittle page to raise funds for a visit to specialists in Australia or the US. - stuff.co.nz |
RSS Feed