Help Noel get to the SMA Conference in the USA

Our amazingly talented, beautiful and adventurous 16-year-old daughter Noel has Spinal Muscular Atrophy (SMA)Type 3 . She is a budding photographer/make-up artist whose talent is being recognized world wide.

8 months ago Noel underwent life-threatening surgery to straighten her spine. It was a success - her spine is straight - but she became significantly weaker as a result and the loss of mobility for her was almost her breaking point. She is beginning to gain some of that back, but SMA being what it is, she will continue to get weaker.

That is...unless there's a cure! Noel is lucky in some respects. SMA Type 1 is the number one genetic killer of children under the age of two. SMA Type 2 can effect life expectancy and comes with significant other health related problems. SMA Types 1 and 2 never walk whereas Type 3s can walk past their thirties in some cases. In Noel's case, she needed a wheelchair full time from age 11, and it's been a very difficult adjustment going from walking (albeit unsteadily) to a wheelchair, to now having trouble even holding her head up at times.

We live in a very small, isolated town in New Zealand and there is very little information about SMA Type 3 in the country, let alone our town. We have dreamed of going to the annual SMA Conference in the United States for years and this year we're determined to go. It's full of experts, other people with SMA and most importantly, we will be able to find out more about what is on the very near horizon in terms of a cure . There are also very promising drugs which can help her to increase her strength!!! Even if she never walks again, it would be amazing to stop the progression of her disease.

We are raising money for the conference fees for Phillip (Dad), Shauna (Mum), Noel and her boyfriend Gershom, as well as accommodation and airfare to the US. We estimate we will need approximately $10000USD. We're also saving like crazy because that will just cover getting there and staying - we'll need food, car rental, and of course spending money on top of that.

Every little bit helps and there are reward levels from $50 that will get you a signed and framed print of your choice from Noel's collection of work.

If you aren't able to donate, you can still help by sharing :)

We will be documenting our trip by video and photos, and hopefully Noel will find some inspiration for a new collection of work. If you're a supporter, we'll include you in the credits!

Thank you so much!

Noel, Phillip and Shauna Ratapu xxx