Our story begins when my beautiful daughter Ocean entered the world at 39 weeks gestation after a natural home birth. It all went smoothly and was the happiest day of my life getting to hold this beautiful wee soul for the first time. Finally our journey together had begun! The first year of Ocean's life was amazing, Ocean was such a vibrant, happy and content wee baby and being a solo mum I felt
extremely blessed that we were such a great little team, Ocean seemed perfect in every way and bought me more joy than I could ever have imagined. But when Ocean was around 14 months old I started to feel concerned, I noticed her ankles seemed stiff when she was pulling to stand and her feet were turning inwards. Nothing could prepare me for the shock I was about to receive! At the age of 18 months old I was told my beautiful daughter Ocean might never walk or talk, she was diagnosed with Cerebral Palsy Spastic Diplegia, a form of CP which causes spasticity/stiffness in both her legs. Suddenly all my dreams of her being wild and free, singing and dancing in the rain, running and skipping along the beach, frolicking in the waves, and just doing everyday things that kids love to do came crashing down, and it started to sink in that Ocean and I had a hard road ahead of us. I was heartbroken that this beautiful wee person may never get to experience some of these wondrous things! Well Ocean has just turned 3 and she lets nothing hold her back! She can definitely talk and is still the most vibrant, happy wee girl, she makes me laugh every single day and she has this magic way about her where people fall in love with her everywhere she goes! We are still the most epic little team, and she definitely loves singing and dancing in the rain, and running along the beach, and frolicking in the waves, but all while I am carrying her, as because of her disability, despite how smart and determined she is, and all the therapy and hard work we put in every day, she is not yet able to walk or stand independently. Since her diagnosis Ocean has had to have regular physiotherapy, has to do stretching every day (which she wildly protests against). Once a week we travel for an hour and a half each way from Waihi to Hamilton and back so Ocean can see a physiotherapist for an hour (which is all that is funded here in NZ) and when I can afford it I incorporate other therapies as much as I can such as Feldenkrais, horseback riding, hydrotherapy and I have just bought Ocean a Power Plate for therapy at home. Ocean 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. Ocean works really hard every day to carry out tasks the rest of us find easy to do, walking for her is like trying to walk thought thick mud that's up to her waist and she needs the support of a walking frame to do this. But despite all this hard work, therapy and the daily fight against spasticity to gain and maintain mobility, the chances are that while the spasticity remains, she will eventually end up in a wheelchair. 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 usually only lasts for around 6-12 weeks and over time after 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 cause drowsiness, the neck to droop, can cause hallucinations, is addictive, can be dangerous, sometimes fatal if the patient was to suddenly stop taking it if using high doses, 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. Botox can certainly be a short term solution to help with therapy and stretching and to slow the progression of this disability but won't be of benefit long term. 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. The last 6 months have been terrifying for me as Ocean's right leg has been getting rapidly worse, it has started to twist inward when standing and it has started dragging while she is walking with her walking frame. 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. There is now a huge concern that Ocean's hips are not forming properly because of the spasticity, therefore causing her leg to rotate inwards, which could result in her needing hip surgery. 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 Selective Dorsal Rhizotomy/SDR, life changing surgery at St Louise Children's Hospital in America that would enable her to walk!!! And she has been accepted as a candidate!!! Dr Parks (the surgeon) predicts that with this surgery Ocean would walk independently in all environments!!! SDR is a procedure that involves opening up the lower vertebrae in the spine and electronically testing the sensory nerve fibers in the spinal chord and cutting a percentage of the ones that are causing the spasticity. Cutting these fibers permanently removes all the spasticity, which prevents deformities developing over time, prevents the need for repeated Orthopedic Surgeries, with the spasticity gone so is the risk that Ocean will lose the mobility she has been working so hard to gain, Ocean would then be able to build real muscle strength and learn to walk, dance, ride a bike, surf and maybe even run. Giving her the childhood she deserves 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" and having this surgery would make her dream come true. Ocean is the most vibrant, strong, smart, determined, kind, caring, funny wee girl who brings so much joy and happiness to those around her, she makes me laugh everyday with her cheeky personality and she really is a blessing to this world. I would love for her to be able to walk independently and to be able to keep up with all the other kids in her life! So if there are any kind hearted souls out there who can afford to give a little or alot to get Ocean the help she needs it would mean a lot to us, and would be helping a really lovely wee girl! Lets get this little Pixie walking, dancing and jumping high! Much love from Kristen and Ocean
xXx
For more information on SDR check out the link below:
http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
