Toby’s life-changing hope

Emily AceSouth Western Times
Claire and Kyle Scheffner will be taking their son Toby, 2, to the United States for life-changing surgery.
Camera IconClaire and Kyle Scheffner will be taking their son Toby, 2, to the United States for life-changing surgery. Credit: Jon Gellweiler

A young Bunbury family is filled with hope after receiving the news two-year-old Toby Scheffner has been accepted for life-changing surgery after months of waiting with bated breath.

On December 2, 2015, Toby was born lifeless after multiple complications during delivery and was rushed to Princess Margaret Hospital to fight for his life, while his mother Claire remained in Bunbury to undergo surgery.

“It was really hard, to pretty much have your baby taken from you,” she said

“I think I got to touch his hand before he went up and that was the only physical contact we had for the first four days.

“It was probably the worst day of our life.”

The future looked bleak as Toby suffered a hypoxic brain injury from oxygen deprivation and at 10 months old he was diagnosed with Spastic Diplegia Cerebral Palsy.

The disorder causes spasticity — a condition where his muscles are continuously contracted — mainly in his legs and mildly in his arms.

Picture: Jon Gellweiler
Camera IconPicture: Jon Gellweiler Credit: South Western Times/Bunbury Herald

“It is pretty much the messages from the brain getting through don’t really connect with the body,” Mrs Scheffner said.

“Only this morning he was sitting there having breakfast and crying and grabbing at his legs because he was cramping.”

Toby receives Botox injections into these muscles every six months to mitigate the effects of the excess tightness, but the procedure is not a long-term fix.

On top of Botox injections, Toby’s weekly therapies include physical therapy, hydrotherapy and hippotherapy with Riding for the Disabled, as well as occupational and speech Therapy.

“We try and put it on ourselves to do as much as we can now – early intervention, because we can never look back later and go –maybe we should have done a bit more,” Mrs Scheffner said.

His father Kyle said the tightness would eventually deteriorate his body over time, causing chronic pain from joint arthritis which could cause him to lose mobility.

But Toby’s parents refused to give up hope that he would one day walk on his own — staying up nights to research every possible treatment until they discovered a Selective Dorsal Rhizotomy surgery available from an American specialist in Missouri.

The procedure cuts the roots of problematic nerves in the spinal cord, freeing the muscles to act normally — saving Toby from a life of pain and reduced mobility.

Picture: Jon Gellweiler
Camera IconPicture: Jon Gellweiler Credit: South Western Times/Bunbury Herald

“We both teared up when seeing that Dr Park has stated in his review of Toby that he is a perfect candidate for SDR,” Mr Scheffner said.

“He believes after the surgery and a couple of years of intense physio he will be able to walk unaided in all environments.

“We won’t have to pin him down and do the needles anymore with botox because that is traumatic in itself.”

Toby has been booked in for surgery in June next year, but it comes with a $65,000 price tag not covered by insurance.

However, the family is likely to fork out up to $130,000 for travel, accommodation and subsequent surgeries he may be eligible for once in the USA.

The family has been overwhelmed with support, with friends refusing to take “no” for an answer and organising the event “Toby’s Will to Walk” at BREC on November 30.

“We really want to try and bring the whole community together so that one day, when people see Toby walking down the street they can feel a sense of triumph that they had a part in making it all possible,” Mr Scheffner said.

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