A West Lothian mum is fighting to “prove doctors wrong” and give her precious six-month old son a better life.
Blake Stewart has spina bifida, no feeling below his hips, sleep apnea and a malformation of his brain which means he has already undergone several operations in his short life.
Despite this, mum Charlene says he always has a smile on his face and she is raising money for specialist treatment in the hope that he’ll be able to walk one day.
Charlene (34), who stays in Fauldhouse with husband Robin (43) and Blake’s five older siblings, has so far been using a Tens machine to stimulate the muscles in the tot’s legs but it’s something Blake’s NHS physio isn’t trained in so is looking at having to pay for private treatment costing around £5000.
She has been working with a physio in Florida via Zoom calls but has found a specialist in Linlithgow that can also help.
Charlene says that after Blake was born she was told he would have no sensation in his legs at all, which turned out not be the case, proving “sometimes the doctors don’t always get it right”.
She added she has been in touch with other parents using the same techniques whose children’s condition has improved.
She explained: “Blake has spina bifida and myelomeningocele from his L2 to L5 spinal nerves, which means he has no feeling from the hips down and no bowel or bladder control. He also has Chiari malformation and hydrocephalus – fluid on his brain.
“Blake has had seven operations, two shunt revisions and an EVD device [external ventricular drainage].
“He also has sleep apnea where he stops breathing while he sleeps. He might need another operation on his airways to unblock any blockages.
“Blake is six months old and been through so much already. He is going to have a massive challenge ahead of him.”
Charlene said the Tens machine has been working to stimulate his muscles but it has been tricky working with the physio in Florida over Zoom calls.
The private physiotherapist in Linlithgow specialises in neurological conditions and will help make sure the Tens pads are in the best place to give maximum results so that Blake will eventually have control over his bladder and bowels.
She’s been told Blake could need the treatment all his life but it all comes at a high cost and hopes people will donate to help her son – the Tens pads themselves need to be replaced every three days.
She explained her husband is currently unable to work as he’s waiting on a double hip replacement due to arthritis and a back injury and their savings were wiped out when their home was flooded when Charlene was pregnant with Blake.
She continued: “This could make a massive difference to Blake’s life, get him moving his legs, gain strength, help with bowel and bladder control and potentially change this little man’s life.
“He is so brave and always has a smile on his face. He makes me very proud.
“Hopefully one day he will prove the doctors wrong and he will be able to stand, through hard work and determination.”
●To donate visit here
Don't miss the latest news from the West Lothian Courier. Sign up to our free newsletter here
