Ruben’s road to life-changing SDR surgery

For those of you that don’t know Ruben, he’s our beautiful 9 year old miracle boy, surprising us with his presence 9 weeks early, and he’s been surprising us ever since! 

Ruben was diagnosed with spastic diplegic cerebral palsy just before the age of 2. In layman’s terms this means that because of damage to the brain, the muscles in Ruben’s legs are tight causing him to walk up on his toes, in turn making every day tasks pretty tricky. 

Over the past few years we have been treating the spasticity in Ruben’s legs with botox injections and serial casting. This method relaxes the muscles and then stretches them through the casting. We get a small window where Ruben can walk with his heels on the ground which improves his balance and gait - but it wears off quickly and we start all over again! 

Supported by Ruben’s medical team in Newcastle, we are applying for life changing Selective Dorsal Rhizotomy Surgey in Boston, United States and we need help tomake this dream a reality! 

During SDR a neurosurgeon makes a small cut in the upper lumbar region of the spine and removes a small section of bone to expose the nerve roots as they leave the spinal cord. Looking through a microscope, the surgeon then separates the nerve roots into groups, finding those that bring sensation back from the legs and leaving the motor nerves aside.


The surgeon tests each sensory nerve root in turn by stimulating it electrically, while a specialist called an electrophysiologist monitors the response in the child's leg muscles. If the nerve responses are abnormal, these nerve roots may be selectively cut. 

The operation releases tone in the muscles, initially this can expose underlying weakness that has been masked by the spasticity. Intensive rehabilitation is required post operation.

Without this surgery, there is a chance that Ruben will decline as he gets older as he battles against the spasticity, he may require a walking frame or wheel chair. 

Unfortunately this surgery is not available to Ruben in Australia, and we are far behind America & the UK who are leading the way and changing lives for kids with CP! 

Ruben is a great kid. He is a kind, funny outgoing little guy who is wise beyond his 9 year old self! He loves music, football, WWE and is obsessed with Kath & Kim and does all of their best quotes! 

As his parents we think he is perfect just the way his is - but we want to make his daily life that little bit easier!

This operation will be self funded, the operation itself around $60,000 USD, we will also have travel & rehab costs needing to spend around 4 weeks in the States. 

We will be running some fundraising events and will share the details of those soon. In the meantime if you can make a donation to Ruben’s dream through this Go-Fund me page! 

Donations

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  • Sabre Rollason 
    • $20 
    • 2 d
  • Lydia Barkley 
    • $100 
    • 5 d
  • Andrew BUCHAN 
    • $100 
    • 12 d
  • Lea Harris 
    • $50 
    • 14 d
  • Mick McCarthy 
    • $100 
    • 1 mo
See all

Organizer

Lyndell Phillips 
Organizer
Williamtown NSW
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