August 2011, Edith and her twin brother were born at 28 weeks due to complications.
Following birth, they both had severe brain hemorrhages which left permanent damage in both children. We were unsure how the damage would affect them developmentally, but as time went on it became clearer that Edith was not hitting her milestones physically, and at around 20 months we got the official diagnosis of Cerebral Palsy Spastic Diplegia.
This means that Edith's muscles in her lower extremeties are unusually tight and cause her toes to point downward and her legs to scissor when she walks.

Through a lot of physiotherapy and with the help of ankle-foot orthotics and Botox treatments, Edith has gained much more independence and is able to use a walker and canes. However, the Botox wears off and the spasticity is still holding her back from walking independently, not to mention the affects on her stamina. The muscles are pulling her legs in unnatural ways, causing pain and deformities in her hips, legs and feet. Because she has had such a great response to the Botox treatments, we were inclined to look into a procedure called Selective Dorsal Rhizotomy. In this procedure, the doctor singles out the nerves in the spinal cord that are causing this spasticity and severs them, removing 100% of the spasticity. This procedure has proven nothing short of a miracle for hundreds of children like Edith. Dr. Park at St. Louis Children's Hospital in Missouri has pioneered a technique to doing the surgery that is minimally invasive and very effective at removing all the spaticity. Unfortunately, our provincial health care will not cover the surgery and many families like us have been left to raise the funds on their own.

Edith has been approved for this procedure and we are hoping to have it done in October 2016 while she is still young and any deformities can be stopped or reversed. We have a long road ahead of us to raise the funds, and we will be in St. Louis for a minimum of 4 weeks, which will be very costly. We very humbly are asking for any donations that you can offer, or at the very least to share our story to raise awareness of this hole in our system.
Edith wants to be able to run and play with her 3 siblings, she understands fully her limitations but continues to push herself daily.
As a mother, it is very hard to see the disappointment in my daughter's eyes when she knows she simply "can't", but there is so much hope knowing that there is a something we can do to help. We are very excited to start this journey.

Thank you,

The Clarkes

For more information on the procedure:
 http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr ‌

Please click the link below to follow our journey:
https://m.facebook.com/walkwithedith/