West Lothian family fundraising for baby boy with spina bifida to be able to stand one day

Family are halfway to their fundraising target as they await disability payment

A family from Fauldhouse are fundraising to raise £5,000 for their baby boy who has spina bifida, to pay for vital support from a Florida physiotherapist, while they await their disability allowance payment.

Eight-month-old Blake Stewart has yelomeningocele from L2 to L5, which is the most severe type of spina bifida. This means he has no feeling from the hips down or no bowl or bladder control. He also has Chari malformation and hydrocephalus fluid in his brain. The wee fighter had already had to endure six operations by the time he was just three months old, with the first operation just one day after he was born.

As well as buying a £966 TENS machine to help stimulate Blake’s muscles, the family found a physiotherapist in Florida, who via Zoom uses spinal stimulation to enable Blake to move his legs, gain strength and sensation below his hips. It also helps with bowl and bladder control.

Blake Stewart, pictured just after he was born, and then after his first operation, one day after he was born.

His mum Charlene believes this life-long treatment will make a huge positive difference to her son. The 34-year-old said: “We found the specialised spina bifida physio a month and a half ago. We use her and a private physio in Linlithgow, who is learning from the Florida physio. Because of this Blake can now push up on his legs with the tens machine on. He gets it done three times for 20 minutes every day. And that will go up every fortnight.

"We have to do six catheters a day and we have already noticed there has not been as much in that, as well as more movement in his hips, since the physio started. The whole point of this is to help us to be able to give him the ability to be able to stand and hopefully be able to walk in the future. I talked to other mums who have used spinal stimulation and their kids are all standing and walking, not needing catheters done.”

With the physio working out at £10,000 a year, the family are hoping to raise half of that while they await confirmation of a disability payment for Blake. Speaking about the online fundraiser, Charlene said: "It’s been fantastic. If it wasn’t for the generosity of these people there is no way we could do this. It’s quite a lot of strangers helping out. It means everything.

"I think I’m still grieving, I’ve maybe not quite accepted that things are going to be the way they are. But if it wasn’t for these people donating, Blake wouldn’t be having this movement and progressing. This is going to be a forever thing, to keep on top of his condition.

"I started the fundraiser two months ago as we couldn’t wait any longer for the disability payment. So hopefully that is sorted soon and we don’t need to keep fundraising.”