TOBY's - WILL TO WALK
Be Sure to follow Toby's progress and event updates via his Facebook page
Beautiful Toby was born on December 2, 2015, after multiple complications during his delivery Toby was born lifeless, not breathing and without a heartbeat. Toby was rushed to Princess Margaret Hospital in Perth 2 hours from Bunbury. Toby had to fight for his life for his first 4 days without his mum by his side. Claire required surgery and was required to stay in Bunbury’s high dependency unit.
Toby’s early diagnosis due to his hypoxic injuries was not positive, and his outcome in life was compromised. At 10 months old Toby was diagnosed with Spastic Diplegia, Cerebral Palsy. This mainly affects Toby’s legs and mildly his arms and causes spasticity and tightness in his muscles.
Toby receives Botox injections into these muscles every 6 months to mitigate the effects of the excess spasticity but this procedure is not a long term fix. On top of Botox injections Toby’s weekly therapies include, physical therapy, hydrotherapy, hippotheraphy, OT and Speech.
Unfortunately, over time the spasticity and tightness in his muscles will deteriorate his body, causing Toby chronic pain from joint arthritis. Years later he could lose his mobility and will require walking aids.
Toby is nearing 3 and with all his own determination, therapies and loving parents he has started to take a few steps but falls regularly.
For the past year Toby’s parents have been researching the intrusive Selective Dorsal Rhizotomy surgery, as a permanent way to reducing the spasticity.
Toby’s parents have been in communication with the world’s best for this procedure. Dr. Park is the lead surgeon at St Louis Children’s hospital in Missouri USA. He has performed the procedure on over 3500 patients. SDR surgery requires Dr. Park to cut the miss-firing nerves in Toby’s spinal cord. This complex procedure eliminates the spasticity from Toby’s Legs.
After multiple evaluations Toby was accepted for this life changing surgery. Since the SDR surgery is permanent and will remove most of the excess spasticity, Toby will no longer need Botox injections, and will be saved from a lifetime of pain and potentially reduced mobility. The benefits of the surgery will also improve his gait function, balance and endurance.
Dr. Park has stated in his review that Toby is a perfect candidate for SDR. With the surgery and hard work Toby will walk un-aided in all environments.
Toby has been booked for Surgery at St Louis in June 2019 – Due to the remoteness and procedure of the surgery, Australia’s private health cover does refund any of the medical expenses below.
Selective Dorsal Rhizotomy Surgery - approx. $65 000 AUD
(2019 - Subject to minor price change)
The above medical expenses exclude travel, 5 weeks hospital stay and family Accommodation.
Choosing the surgery has been a very hard decision for Toby’s parents, but they are extremely confident from medical advice that this procedure will give Toby a better life. They have reached out and spoken with many parents who have had their children undergo SDR. None have expressed any regret for their decision, and have said it was the best thing they could ever have done for their child.
Any help you can give Toby for his new legs will be greatly appreciated.
Be reassured that any funds raised will be directly spent on Toby’s surgery and intensive post therapy’s.
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