When rain is pattering on pavements and most people are rushing for shelter, little Sam Deakin-Mant longs to be outside.
Like the majority of youngsters, six-year-old Sam loves the idea of pulling on wet weather gear and splashing around in big puddles.
But for Sam that simple childhood pleasure is a dream. The lively and funny schoolboy has cerebral palsy and needs a wheelchair.
Sam’s dearest wishes in life are to kick up a few ripples in pavement pools and to walk into his classroom with his friends.
At the moment the things that most children take for granted are out of reach for Sam, but there could be hope on the horizon.
The Cosham youngster has been accepted for an operation in the US that could make him more independent, help him achieve his dreams and ultimately change his life.
‘Sam has said he wants to splash in puddles and walk into his classroom,’ says his mum Lisa.
‘We have to be realistic but the operation could help him walk with a frame. It might be that he can only take 20 steps with a walker but that is massive to Sam.’
Lisa explains that the procedure could reduce the painful spasms that Sam experiences. But she adds: ‘The icing on the cake would be if he could take those steps.
‘That would make the difference between whether he can live independently or need a carer in the future. If he can get himself out of his chair on to a frame, then he can do things for himself. That will change his world.
‘Having full-time care isn’t so much of an issue now but it will be in the future.’
But the procedure that could improve his life is extremely expensive. The family need £40,000 for the operation, a stay in the US and extensive physical therapy in the states.
They estimate another £30,000 will be required for gym equipment and physical therapy when Sam returns to the UK.
Friends and relatives have started several fundraising initiatives, including a Facebook campaign. Lisa and friends also did the Great South Run. But they have a long way to go and are looking for help (see panel).
‘We feel really funny asking for financial help,’ says Lisa. ‘It’s not something we’re comfortable doing but we want Sam to be the best he can and this could make a huge difference to his life.’
Sam is unusual in that he only just hits the criteria for the operation in America. If his condition was any more severe he wouldn’t be able to have it. The procedure is newer in the UK and he doesn’t meet the requirements. ‘They like children to be walking with frames already so they can make improvements from there,’ explains Lisa.
There is also a deadline looming. The procedure and post-op physical development works best for children under eight – Sam is seven in August.
Cerebral palsy is a condition that affects muscle control and movement. It is usually caused by an injury to the brain before, during or after birth. The condition varies greatly in severity.
The operation deals with nerves sending incorrect signals to the muscles causing stiffness and spasms. This will allow weaker but normal signals to take over.
Sam had an infection at birth and was eventually diagnosed with cerebral palsy at 10 months.
Lisa and Sam’s dad Paul knew nothing about the condition and were immediately on a steep learning curve. Lisa says: ‘We were obviously completely shocked when we found out. We just didn’t know how it would affect him and of course we feared the worst.
‘It almost felt like a loss – for the kind of life Sam might have had.’
But their boy has grown into a bright and cheeky child who is adored by his family, including brothers Oliver and Henry.
Sam can move his legs but has little control over them. Incorrect signals from the brain and abnormal muscle tone mean they scissor if he tries to take a few steps.
He has a full range of vocabulary and average intelligence but his speech is broken and learning can be difficult because of his physical problems.
‘He gets very tired because his legs spasm and he has to think about everything he does,’ explains Lisa. ‘His wheelchair helps him sit up straight because he has a weak trunk , but he has to think about that all the time.
‘It’s all those things we take for granted.’
But he’s a happy little boy with many friends at Court Lane Infant School and a passion for singing and dancing.
‘He can dance if I’m holding him, says Lisa, before producing Sam’s collection of about 20 microphones.
‘He’s always singing, he absolutely loves music,’ she explains.
Sam giggles when he says his favourites are Rihanna and Olly Murs. And then he treats his family to his own rendition of Olly Murs’ Troublemaker.
‘He’s very cheeky, he’s also very brave,’ says Lisa proudly, explaining that Sam had a major operation when he was five because his hips had become dislocated.
‘It was a massive thing for us but Sam remembers it as a positive experience because they were so good to him.
They had a CD and microphone ready for him when he came round.’
As people with cerebral palsy get older there is an increased risk of pain, joint problems and the need for operations. Lisa says the procedure in the US would reduce that.
The operation is risky but the Amer-ican surgeon has been performing it for over 20 years. And it requires extensive strength building therapy afterwards.
‘Maybe Sam will be able to bend his legs properly, we just don’t know what he’ll achieve, but if he has this done he’ll have to put in a lot of hard work after the operation,’ says Lisa.
‘Even then he’ll still have issues but this will give him the best chance possible.’
A friend of Sam’s family heard about the little boy’s chance for an operation and really got the fundraising ball rolling.
Neil Wilson came up with the idea of a Facebook link, giving people the opportunity to donate just £1 and bring it to the attention of all their friends.
That and other activities by family and friends has so far raised more than £4000 but there is a long road ahead.
Anyone who would like to help Sam can do so by visiting justgiving.com/Lisa-Deakin.
Or there is the opportunity to donate £1 by text. Send text code SAMD66 to 70070. Clicking the link to claim Gift Aid will give the cause a further 25p for every £1.
All money received will be used directly for Sam’s fun but is being collected by children’s charity Tree of Hope.
Children with cerebral palsy have difficulty controlling muscles and movements as they grow and develop.
The condition is not progressive but the effects may change over time for better or worse. As people with cerebral palsy get older they may experience more pain and joint troubles.
Common problems reported by people in their 30s and 40s include osteoarthritis, increased back pain, loss of joint flexibility and reduced energy levels.
No two people are affected in the same way. Some have the condition so mildly that it’s barely noticeable. Others are profoundly affected and require help with many or all aspects of daily life. Therefore therapies and treatments are tailored to a person’s individual needs.
The charity Scope offers information and support. Visit scope.org.uk.