Lets get Ocean walking - Our journey to SDR

Hey everyone,

Thank you for viewing our page.

My beautiful daughter Ocean has been accepted as a candidate for Selective Dorsal Rhizotomy (SDR) - Life-changing surgery at St Louis Children's Hospital in Missouri, USA, that will enable her to walk!!! We are on the wait list for surgery in July 2018 and to make her dream to walk a reality we need to raise $150,000.

When Ocean was 18 months old she was diagnosed with Cerebral Palsy Spastic Diplegia, a form of CP that causes stiffness/spasticity in the muscles in her legs making walking (and other things) difficult and sometimes painful. Ocean has just turned 3, but because of this disability, despite how smart and determined she is, she is not yet able to stand or walk independently.

Since her diagnosis Ocean has had to have regular Physiotherapy, we travel for 3 hours every week from Waihi to Hamilton and back so Ocean can attend an hours physiotherapy (which is all that is funded in NZ), she also does daily streching, and when I can afford it I also incorporate other therapies such as Feldenkrais, Hydrotherapy, horse riding, and Ocean has a Power Plate for therapy at home. She also has to wear AFOs/braces on her legs or special Orthotic Boots and has a walking frame to help her to be more mobile. But despite all the hard work, therapy and the daily fight against spasticity to gain and maintain mobility, the chances are that while the spasticity remains, Ocean will eventually end up in a wheelchair.

Over the last 6 months Ocean's right leg has been getting rapidly worse, the tightness has increased causing her leg to twist inward when standing and has started dragging while she is walking with her walking frame. She has worked so hard to gain what mobility she does have, its heartbreaking to see that slipping away. There is also a huge concern that Ocean's hips are not forming properly because of the constant tightness, which could result in her needing hip surgery. Spasticity causes a huge amount of wear and tear on the body and over time can cause deformities in the joints and bones and leads to the need for repeated Orthopedic surgeries.

Various specialist are now wanting to start giving Ocean Botox injections while under General Aesthetic to help ease the spasticity in her legs, but this is a temporary solution to a life long condition that only lasts for around 6-12 weeks and over time with repeated use it stops being effective. They have also suggested medicating her with Baclofen which is a drug that relaxes ALL the muscles in the body and can have nasty side effects such as drowsiness, the neck can droop, can cause hallucinations, is addictive, can be dangerous and sometimes fatal if the patient was to suddenly stop taking it, and there have been cases where it has caused brain damage when used over a long period of time. So I don't see either of these options as effective ways to manage her CP. Unfortunately here in NZ these are our only options, along with repeated Orthopedic Surgeries as needed which involve cutting and lengthening the tendons which become shortened over time.

As a mother, I will do anything I can to help improve my daughter's quality of life. So have had to look outside of NZ to find the help she needs. I sent off an application to find out if Ocean would be a candidate for SDR and Dr Parks who preforms the surgery, predicts that with this surgery Ocean would walk independently in all environments!!!

SDR also prevents deformities developing over time, can prevent the need for repeated Orthopedic Surgeries, Ocean would no longer lose the mobility she has been working so hard to gain, and would then be able to build real muscle strength, learn to walk, dance, ride a bike, swim, surf and maybe even run. Giving her the childhood she deserves, a chance to keep up with her friends, and a life time free from spasticity. It is highly recommended that the surgery is performed between the ages of 2-4, and in order for this surgery to be of benefit Ocean would need intensive physiotherapy for up to two years post op, 5 days a week for the first 6-12 months following surgery, and then would hopefully reduce over time.

Unfortunately the surgery and physio to follow is not funded here in NZ, so to make this a reality we need to raise $150,000 and get her to America as soon as we possibly can.

Ocean tells me on a daily basis that she "wants to be able to dance and jump high". We have big dreams for these little feet, so lets make them a reality and get her walking, dancing and jumping high!

Ocean really is an incredible wee person. She inspires me every single day with her strength, determination and beautiful kind loving heart. She bravely faces her daily challenges with such spirit, and has this vibrant, cheeky, and playful personality that brings joy to everyone around her. I couldn't be more proud of her and would love for her to have the chance to get her little feet dancing!

So if there are any kind hearted souls out there who can afford to give a little, or a lot, to get Ocean the help she needs you really would be helping a magic wee girl!

Love from Kristen and Ocean

For more information on SDR at St Louis Children's Hospital please check out the link below:

http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr

And to follow our journey to SDR and beyond check out our Face Book page: Lets get Ocean walking - our journey to SDR