My son Cain desperately needs a life-changing surgery the government have stopped funding for. Suffering with cerebral his legs are extremely tight preventing him from walking unaided.
Cain was born 28th August 2005, 11 days overdue.
He was born with a unilateral cleft lip and palate, his lips was repaired at just 11 weeks old and his palate later at 6 months old.
Without any further issues we continued to live happily.
When Cain was around 8-12 months old, he started to show signs of tightness in his legs and both hands. He could not sit in a pushchair like you would expect, I often found myself tucking his bottom back so he was actually sitting on it.
In time Cain started to crawl, but not the same as my friends children had. He would commando crawl, and quite fast too. One day he tried to stand against our sofa, and we noticed his feet were posed like a ballerina. He attempted to walk the length of our sofa, at this point his legs scissored together and he stumbled only for us to catch him.
Concerned, I contacted our community paediatrician.
After some discussions and a visit to asses Cain, it was determined that Cain had "Cerebral Palsy".
They explained that, How this would affect Cain is uncertain and we were advised that he may not walk, stand independently or ride even ride a bike.
Devastated we searched for ways to help makes Cain's life better.
He started Physio sessions, and we attended hot water therapy sessions.
As Cain grew his condition appeared to show itself more and more. Unable to hold him up, we were supplied a standing frame and specialised seating for eating and other activities.
Eventually his special needs pushchair was to small for him and our only option following this was a child's wheelchair.
Cain continued to grow into a polite, vibrant, confident and extremely clever little boy.
He moved on from the standing frame into a Kaye walker and at age 6, we watched Cain take his first steps. Something both myself and my husband will truly never forget.
Since the age of 5 years old, Cain has received botox injections directly into his leg muscles,
This procedure would lower the effects of tightness in Cain legs and provide us with a short time frame to apply more intense Physio.
Cain was also prescribed a drug called baclofen, which also lowers the muscle tightness.
Now at age 11, Cain is in desperate need for more help to reduce the tightness and stiff muscle tone which prevents him from standing independently and walking independently.
Cain is in a lot of pain daily due to the muscle spasms in his legs. He wakes through the night several times because they hurt him.
Desperate to help him or reduce his pain, I again contacted specialists to discuss further treatment or care for Cain.
With little roads to take, Cain's consultant referred us to John Radcliffe, Oxford, England.
In May 2016 we met with a spasticity specialist.
Hoping for some good news our hope soon faded to more despair.
Although Cain is a candidate for a treatment called SDR (selective dorsal rhizotomy) there is currently no government funding for this procedure.
This has left us utterly devastated for Cain.
Cain speaks of walking "when he is bigger"
He speaks of running through our local park to visit his nana "when he is bigger"
He speaks of driving and racing, golf and football "when he is bigger"
He speaks of flying an emergency helicopter to save people.
Cain is filled with dreams of "when he is bigger" in Cain's eye's he is just too small to walk, or do things that right now he can not. Cain's determination fascinates me, he is outstandingly clever attending main school despite his learning difficulties and disabilities.
Cain never complains about the many hospital appointments, or the intense Physio sessions he has. He smile's always despite he pain. He tries with every ounce of energy he has to walk, and ride his trike.
We want nothing more then for Cain to be happy and content in life, having SDR would completely change Cain's life in more ways then he can possibly imagine just now at age 11.
With nowhere else to turn, I am now fundraising along with all of our Family to raise funds to provide Cain with this procedure privately..
The cost of this procedure is estimated between 30k-60k.
Having researched every avenue we estimate that the cost for Cain would be as high as 45k.