Caitlin's Scoliosis Journey

Our beautiful daughter, Caitlin is just eight years old and has recently been diagnosis with very severe scoliosis (curvature of the spine) that's progressing very rapidly. Left untreated her spine will eventually strangle her heart and lungs and so as her parents we've been searching for the best treatment options. We've been through a few months of constant surgeon and doctor appointments (with many tears in between!!) and in NZ her only option is growing rods (large steel rods screwed into her spine) that will limit her movement and flexibility. This will lead on to spinal fusion later in life where her spine will be fully fused which more than often leads to chronic life long pain. Her best bet for a normal, pain free life lies overseas. There is a scoliosis care clinic in LA who use extensive physical treatment to lengthen the spinal cord and reduce muscle contracture. It could be that after this treatment she could have a good chance of avoiding surgery all together, however as her curve size is already so large, it could still be likely that following this treatment, within the next couple of years perhaps that she'll still need spine surgery. It's hugely scary stuff that comes with many risks and her best bet is a surgeon in Germany who performs the newest technique available (VBT) which uses a flexible band attached to the spine to pull it straight as she continues to grow.

Caitlin's condition has 100% of progressing rapidly due to her age and her curve is already and S shape with 55 at the top and 50 degrees below (it was 45 and 42 degrees when we discovered it in February this year). She is wearing a back brace 20+ hours a day to try and hold the curve while we work towards this treatment plan. It's so painful for her both physically and emotionally, but we're so very proud at how well she is adjusting to the brace and coping with the emotional toll of this disease.

We'd like to get Caitlin to a scoliosis care clinic in LA for physical therapy asap, we would need to go back every three months and this could cost us $20-30K per visit. Within a year - two years it's likely she'll need VBT and Germany has one of the most experienced surgeons in the world and is ironically also one of the cheapest options ($80K+ travel). If we had surplus from our fundraising, Caitlin wants to start a foundation to raise money for other kids who can't afford treatment to help them too and we would like to work on starting a Scoliosis Foundation in New Zealand to do just that. We love that in a time she is going through so much herself that she would think about how to help others going through this too.

We'd love this page to a way to spread awareness of this horrible disease and the pain so many have to suffer through each day. But also to spread the word and ask those who would like to please think about fundraising on our behalf. Asking for just donations doesn't feel right to us, but we'd love our family and friends and even strangers who feel a connection to our story to come up with fundraising events on our behalf to raise money to donate. Using your own family and friends connections, we'd love to think of everyone having a good time while they raise money!

Some fundraising ideas we have are:

Movie nights

Bingo nights

Raffles

High teas (like a pink breakfast type of thing)

Asking any businesses or celebrities you may know to help you fundraise on our behalf.

In addition, we'd like to ask if you to think about involving the company you work for...if work for a large corporate or a small family company even, they may be willing to donate products or money to help us with fundraising events (thinking gifts for gift bags for movie nights or drinks for family days etc or products for raffles) or may be happy for you to arrange a fundraising event at work and get all your work colleagues involved. If anyone has connections with celebrities that may be keen to help us at fundraising events that would be amazing too! Anything at all would be so wonderful.

We truely appreciate all the support we have from family and friends in this journey so far and we know we will continue to receive your support. We couldn't do this without you all and feel very blessed to have you all in our lives xxx