Words and photo by Dave Barry
Four friends are to cycle from Morecambe to Scarborough to pay for life-changing surgery for a little boy.
Max Turner is a plucky little character who has drawn one of life’s short straws.
He was born prematurely and diagnosed with cerebral palsy.
His father Paul and three friends, who he met when they were at Scalby School, are to undertake a cross-country bike ride over three days, starting on 21 September.
“With limited to no cycling experience, some might call this crazy”, Paul says. “However, we are doing this to help Max, who desperately wants to walk”.
Paul will be joined on the 150-mile ride by his old classmates Andy Coole, Ian Perrelle and Steve Yates.
The ride will kick off a fundraising campaign that will hopefully allow Max to have transformative surgery, either in the UK or US.
The surgery, rehabilitation and physio could cost up to £100,000.
Max and his twin sister Alice were born six weeks prematurely and spent three weeks in the hospital’s special-care baby unit.
Soon after Max was born, Paul and his wife Cath realised something was wrong.
He was nearly at the point of organ shut-down and had a hypoxic event with a lack of of oxygen which permanently damaged his brain. He was diagnosed with cerebral palsy spastic diplegia.
Throughout his short life, Max has suffered with stiffness and rigidity, leading to restricted movements, problems with balance and coordination and a big delay in reaching major physical milestones such as walking.
Physiotherapy is essential for Max's development. Early intervention is key to helping him towards gaining good head control, core strength and a good range of mobility.
However, due to a combination of low muscle tone and spasticity, it remains difficult for him to get into various positions such as sitting or up on his knees or keeping his feet flat on the floor without the need for splints.
Paul and Cath, who live in Scarborough, have been taking Max to Brainwave in Warrington since October 2016. The charity helps children with disabilities and additional needs to reach their potential through therapy programmes devised for parents to deliver within the family home.
Paul says: “We follow the programme alongside our local NHS physio to help Max build up his core strength, balance and coordination. He is making good progress in his new walker and loves to chase his sisters around. However, it still remains almost impossible for him to move around independently.
“We have been researching further treatment options and believe now is the time to start fundraising for a life-changing operation known as SDR (selective dorsal rhizotomy) surgery to increase the chances of Max being able to live and walk independently”, Paul says.
“It works by removing the spasticity in the body and makes it much easier for him to do the everyday things we take for granted. It will transform his childhood and reduce the long-term effects of cerebral palsy such as muscle shortening, deformity and pain”.
Unfortunately, the treatment is not available on the NHS so the Turners have approached a leading paediatric neurosurgeon, Dr TS Park in St Louis, Missouri, USA.
The surgery, followed by intensive rehabilitation and physiotherapy for up to three years, will cost £100,000.
Paul says: “For the time being, we are working hard to ensure Max can build enough strength to benefit as fully as possible from the operation.
“Difficulties aside, Max is a beautiful boy and melts our hearts with his infectious smile. He is very chatty alongside Alice and he makes us proud every day.
“He loves being with his sisters and friends and giggling and joining in. He is very determined and hopefully with the love and support from our friends and family he will be able to lead a fully independent life. We will try our upmost as parents to give Max the best possible chance and with a little help from our friends we will succeed”.
To donate, go to www.justgiving.com/fundraising/getmaxmoving.