16 year old Maija needs medicine for SMA in Australia as not funded in NZ!

Our gorgeous Maija is 16 years old now, with a mighty brain and a determined personality, but with a body that is deteriorating fast from Spinal Muscular Atrophy! My name is Emma Chadwick, and I am a friend of Maija Fredrichberg and her wonderful family. I'm starting up a give a little page for them, as there are medications like Risdiplam and Spinraza that can help her, but are not funded here in New Zealand. We need to get Maija to Australia. This is a huge and costly exercise, and if we could get them some help for the first 6 months or so, for accommodation and flights, and some support, the move will be so much more achievable. We need to do this as soon as possible as time is running out.

Spinal Muscular Atrophy (SMA) is debilitating neuro muscular condition. She bravely shared her journey on 'Attitude' several years ago. Back then, she had movement in her arms and was able to feed herself and hold her head up. Maija is just like any other teenager, keen on socialising, would love to be a voice actress, and is thinking about her future, however, she is now only able to move her fingers, and her face. At this point, she can still swallow, allowing her to take joy in food and communication, and, with just these last remaining muscles, Maija can surf the internet, chat with her friends, drive her power chair (which is now her body), talk, laugh, and enjoy Mum's yummy cooking! Without treatment, she will no longer be able to do these things. She will be tube fed, without any remaining movement, and we can't bear to think further than that.

Jessica Russell, Maija's Mum, was interviewed recently for Radio NZ, which goes a little further into what life is like living, loving and trying to help Maija. Here is the link for a deeper insight. https://www.rnz.co.nz/news/in-depth/448255/family-says-choice-is-life-in-australia-or-death-waiting-for-pharmac

While this has been incredibly challenging and heartbreaking to watch a family go through, there is hope with breakthrough medication. SMA is a progressive life- limiting neuromuscular condition and both Risdiplam and Spinraza have been proven to at least stop the disease progressing, and in some cases, restore some of the already lost functions. Literally life changing! Every day we wait is another neuron lost. Despite years of campaigning and pleading, this life changing treatment is not funded here in NZ.

I would like to reach out for your help with the costs involved with this relocation during treatment. I estimate $50,000 will get them to Australia, find suitable accommodation,pay for freight of disability equipment, and Maija can get treatment started. It will be ongoing but at this point if we could help raise 6 months or so of general set up costs, it will go a long way to help Maija and get the treatment underway. In time, we could keep the family together. Jessie and Maija will fly over to Sydney and get the ball rolling, while Jessie's husband Fred mans the fort here in Tauranga and sorts out the house, and carries on working along side Maija's brother George. Its a logistical challenge! I hope to be able to fly to Sydney and help Jessie while they are on their own.

Having completed my own huge health battle myself with cancer, it was Maija, who inspired me, motivated me, and understood and showed me what true resilience looks like. I thank Maija for being who she is, and her remarkable family. I thank her Mum Jessie, for helping all those other families who have needed help with understanding disability funding and advice for other families in similar situations. I thank Maija's Dad, working tirelessly in a local retail shop and coming home to clean, cook, hoist and help, and George, Maijas always supportive loving brother. I would really like to gather some help for them. Jessie has now left work to care for Maija as her needs increase, and we all appreciate any contribution towards this.

You will receive regular updates on here, and I will let you how its all going! How we allocate the funds, and our massive all-encompassing thankyous and internet hugs! Our girl, will have the biggest ray of hope.

Our Maija has made the news! https://givealittle.co.nz/cause/16-year-old-maija-needs-medicine-for-sma

Thank you so so much x