One Dollar Warriors fight for Emily

Our daughter Emily is now 13 years old. Emily has a very rare connective tissue disorder, so rare in fact she is the only one in the world to have this condition.

We would like to say a great big THANK YOU to all the One Dollar Warriors for helping us on our journey to straighten Emily’s spine. We are so grateful for all the support from friends and what seems like a great big group of new friends. The truly overwhelming generosity and wonderfully encouraging kind wishes we received gave us the feeling that we are not alone in this which is quite an incredible feeling.

We have spent many years and as much energy as we could muster trying to work within New Zealand’s health service and travelling to visit specialists in Australia and the USA, at great personal cost both financially and emotionally, to try and find a solution without putting Emily at great risk of long term damage.

So now we feel incredibly lucky to have available a proven method of scoliosis correction without, for Emily, potentially life threatening surgical intervention.

So the next phase of Emily’s journey began with our December visit to the Sydney Schroth specialist, Larry Cohen. This was fantastic! Larry worked one on one with Emily for a few hours each day for the week we were there pushing her to complete various exercises to gain a picture of her capabilities and potential gains to be made. Emily felt as though this was the first time in her life she could improve her spine and her physical health. Very empowering for her and encouraging for us as parents. Larry worked hard to design a suitable program which Emily completes daily. We have set up a little gym space in the garage which is working great. Emily has had positive comments from people noticing her changing posture which is really exciting.

Larry has said Emily should see, Dr. Manuel Rigo the world Schroth authority in Spain and be evaluated by him, as her situation is so rare, to perform the wrong exercises over many years may make her spine worse. Dr. Rigo has requested that Emily attend one of the 4 week long programs they run in Barcelona!

So a new phase begins. We have signed up to attend a course with Dr. Rigo on the 3rd of July. The therapy will be 3-4 hrs, 5 days a week for 4 weeks. He will modify the current program to suit and work with Larry in Sydney to help Emily get the best from her exercises for years to come. On our return home Emily will need to meet with Larry in Sydney regularly so he can provide ongoing guidance with Emily’s new programme.

At this stage this all needs to be funded via our own resources and fundraising.

To recap Emily's situation,

I need help for a lifesaving treatment on my spine as it has a 110 degree curve. Unfortunately surgery is not an option for me as I am at very high risk of dying because of my unique insides ( heart stuff) But I also can’t just leave my spine because it will shorten my life. The best course of treatment over the years has been to just 'wait and see', but now I don’t have time to wait I urgently need treatment on my spine as I am about to become a teenager which means lots of changes in my body. I love school and join in all activities to the best of my ability. I have dreams of one day getting to university.

The first few years of my life were not easy. I needed support when I was held and support when I was sitting, I spent a lot of time in and out of hospital and needed oxygen to help me breathe. I was very late to walk and then spent half my life walking on my ankles.

Recently, Mum and Dad took me to meet with a number of specialists at a conference in San Diego where we were directed to a method of straightening spines without surgical intervention. Developed in Germany in the 1920's, known as the Schroth method, which has evidence to support it, it involves an initial intensive course of physiotherapy usually lasting a few months followed by ongoing daily maintenance and follow ups most of which can be done at home. The nearest training clinic is in Sydney and the guru is in Barcelona, Spain. I am imagining my family being amazed at seeing a strong spine and for me it is my dream that my spine gets a chance of being normal.

love the Palairet's x

A story about me on SEVEN SHARP!

http://tvnz.co.nz/seven-sharp/darling-dwarf-video-6176035