A life changing campaign has been launched to help a Harrogate boy with cerebral palsy live a normal life.
Three-year-old Sebastian Skinner from Bilton can’t jump in puddles, kick a ball or ride a bike like most children, however his parents are hopeful that a pioneering operation could change his life.
Leigh and Selina Skinner have set up the ‘Standing with Sebastian’ appeal to raise the £75,000 needed to fund the life changing Selective Dorsal Rhizotomy (SDR) operation in the United States.
Sebastian has spastic diplegia, a form of cerebral palsy which affects the muscles in his legs impacting Sebastian’s balance, standing, walking, flexibility and mobility.
Sebastian’s dad Leigh Skinner, 34, said: “He is starting to notice he is different to the other boys now, and that he can’t do everything they can, which is heart breaking.
“He can’t jump, he can’t ride a bike, he can’t go up and down stairs easily.
He added: “We went to watch the Tour de France and he loved it but he won’t be able to ride a bike.
“He was trying to climb the stairs on his own the other day and when I went to help him he said. ‘No I want to do it like the other boys’.
“It will get harder for him when things get older, he is becoming aware that he is different and it is sad to see as a parent. I would love to see him riding a bike.”
Over the last few years Sebastian has had a number of therapies and medical aids to assist and support with his development.
Mum, Selina Skinner, 33 explained he has had hydrotherapy to relax my muscles, used a sitting frame and standing frame to help me strengthen my core and stand properly.
“When he was younger he had a special chair to sit in and he has had to use a Kaye walker frame to get about.”
Sebastian still wears specially moulded leg splints and boots to support his legs, which have to be replaced regularly as he grows.
“He is such an energetic, happy little boy. He calls them his wobbly legs,” said Selina, “He is very determined to enjoy himself and try and join in with everything, but he can’t always do the same amount they can and he can feel left behind.
“He falls over a lot, and he gets very frustrated at times. He just wants to be able to play like all the other girls and boys.”
Sebastian was diagnosed with spastic diplegia when he was 18-months-old.
Mum Selina said: “I remember when he was diagnosed, in a way it was a relief, to be able to confirm it but it was still very hard to hear. You don’t want to hear those words.
“I had known from about eight months – he wasn’t sitting up and I knew it wasn’t just that he was behind. I had looked it up on the internet and knew that was it.”
Sebastian underwent an MRI scan which confirmed his diagnosis.
Selina said: “I think some people thought I was worrying too much, but I knew as a mum, I knew as a parent that things weren’t right.”
The couple who have been married for seven years also have a daughter, Darcy, who is 11-months-old.
“Now that I have had Darcy I can see even more clearly that the signs that something weren’t right were there right from the start with Sebastian. He was always very stiff as a baby and in pain from his muscles.”
Sebastian’s condition will get worse as he grows older and his legs will tighten and bend. Without the operation it is likely he will need to start using a wheelchair. “That isn’t what any parent wants to see,” said Leigh.
“We were told just to try and keep him mobile for as long as possible – that was hard to hear,” added Selina.
SDR is a neurosurgical technique used to treat spasticity in the lower limbs.
The operation involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord which are then electrically stimulated until they find the ones that cause the problems. These are then cut, permanently relieving the tightness, improve function and to improve walking. The cost of the operation by SDR specialist Dr Park, who has successfully changed the lives of over 3,000 children and young adults, at St Louis hospital would cost £75,000 and is not currently funded by the NHS.
Selina said: “Having SDR would be truly life changing. After the procedure and rehabilitation there is a very good chance he would be able to run, jump, and climb the stairs.
“He could even play football with his dad and get a bike and lead a more normal independent life.”
The couple have started their fundraising efforts this summer, selling cakes at Ripley show, organising a charity fantasy football league and a fashion show at the George Hotel.
Sebastian’s doctor at the Leeds General Infirmary, Dr John Gooden has recommended the operation is done as soon as possible.
Selina said: “The optimum age for the operation is before four-years-old so we really feel that time is against us.”
l See https://www.justgiving.com/standingwithseb/ to donate.
In limbo as time runs out
Last month NHS England announced that a small number of children in the UK with cerebral palsy could undergo the Selective Dorsal Rhizotomy (SDR) operation as part of a trial programme.
While some parents across the country celebrated the news, the Skinner family felt left in limbo.
“They have made no further announcements on who will get get the operation or how they will decide.
“We spoke to our doctor at the Leeds General Infirmary about it after the NHS announcement, and he told us to keep fundraising,” said mum, Selina.
“It’s difficult, people don’t realise what it all means. It is just a trial and there are no guarantees, especially if the after care is not available.”
James Palmer, Clinical Director of Specialised Services at NHS England, said: “For children with cerebral palsy, being unable to walk easily can be extremely distressing and painful. Although current evidence is limited, SDR surgery shows real promise for some patients with mobility problems and that’s why we want to explore it further through our innovative evaluation programme. Not only will this enable a number of children to have potentially life-changing surgery, improving their mobility and independence, but this provides a real opportunity to gather the vital evidence we need on the effectiveness of the procedure, for the benefit of our patients.”
The operation is usually carried out on children between the age of two and six, with St Louis recommending surgery before a child is four for the maximum benefit.
Sebastian is three and a half-years old and the family worry that time is against them.