Skip to content

'We fight for everything to help our disabled son'

Charlie Stubbsin Telford
News imageCharlie Stubbs / BBC There is a woman with tied back black hair with a black tshirt on. She is sat on a grey sofa. To her left, there is a boy with brown hair, blue and white rimmed glasses and a light brown t-shirt. He is sat down on a black comfortable chair, and his head is tilting to the left.Charlie Stubbs / BBC
Victoria has become a full-time carer for Kian, who has the rare condition lissencephaly and was originally told by doctors he would not see his second birthday

"Ever since Kian was born, it feels like we have had to fight for everything and we are not the only ones."

Victoria, from Telford, feels like her severely disabled son, 7, has been let down by the system that was meant to help him.

She and partner Christopher, from Donnington, said work done to accommodate the family in the house they were placed in by Telford and Wrekin Council has not met Kian's needs.

The council has agreed the renovations had been unsuitable, but bosses say new work is due to happen this month to properly adapt the house for their son, who was born with a rare brain condition called lissencephaly.

On top of those issues, the couple have felt forced to launch a fundraiser because they can't afford to get Kian the specialist wheelchair he needs.

His doctors had said he wouldn't live to see his second birthday and would have complications with epilepsy, as well as issues with eating and poor sight.

'I can't physically manage'

That news led Victoria and Christopher to decide to become his full-time carers.

"If it wasn't for me, Kian would not be able to get out of his hospital bed," Victoria said.

"Lifting him into a bath [is a challenge.] I can only do that once a week because my back is dead to the world, but Kian deserves all the personal hygiene."

She adds she often bathes him in the hospital bed he has in his bedroom, because she "can't physically manage to get him" to the bath.

News imageCharlie Stubbs / BBC Through a white doorway, there is a high white bath with a blue chair inside. On the bath's rim, there are three cleaning bottles. Next to it is an open window with a small circular mirror and bottles next to it. There is also a small sink and the back of a wheelchair.Charlie Stubbs / BBC
During the earlier renovation work, a high-rim bath was put into the bathroom - something that was unsuitable for Kian

An occupational therapist found a house for the family, but Victoria said she felt like she had to take it, even though she thought Kian's needs were not being met.

"As parents, when they are telling you that they've got you a disabled home and you've got a severely disabled child, what choice do you have? You're going to take it," she explained.

The council then gave the family a £33,000 "Disabled Facilities Grant" so the house could be renovated in a way that could best help Kian.

However despite protesting, Victoria said she felt ignored when she tried to tell the builders the work they were undertaking would not help her son.

As a result, she said she was then left with no choice but to "partition my living room off and put Kian in his hospital bed".

'Commitment to care'

After staff visited their home, the council admitted the family should not have been placed in the house.

The authority added that work to improve the adaptations and living arrangements in the family's house were due to take place this month.

It added "while it would be inappropriate to comment on the details of individual cases, we can confirm that we are working closely with the family".

"Supporting residents to live safely, independently and comfortably is an important part of the council's commitment to protect, care and invest in our communities, creating a better borough for everyone."

News imageCharlie Stubbs / BBC There is a man with short brown hair and a black jacket fleece on. His arm is on his son's lap. To his right, there is a boy with brown hair, blue and white rimmed glasses and a light brown t-shirt. He is sat down on a black comfortable chair, and his head is tilting to the left.Charlie Stubbs / BBC
Christopher said the wheelchair Kian currently uses does not suit his son's needs

Christopher explained the family was trying to make memories but Kian's current wheelchair, supplied by the NHS, made it difficult to get out of the house.

"[It is] just not good. You go out and you are holding his head because the wheels are not any good. The chair's just not comfy for him," he said.

"You're struggling to do days out with the other kids because it's not comfy for him."

'Risk a fracture'

Victoria said she has had to modify it to stop Kian from getting hurt.

"Kian needs a tilt on his [chair] and the more tilt you put on it, the more height you lose," she said.

"I'm pushing him and I'm bent down and it's a really heavy chair. It's got suction, oxygen, a Sats machine, a feeding bag and medication. It's just not suitable.

"If he goes into a seizure, his arms are getting stuck down the side of the pram and we could be at risk of a fracture or a break because you can't move them arms. It doesn't meet any of his needs. It's just awful."

In connection with the wheelchair difficulties, Shropshire Community Health NHS Trust said: "We want everyone who uses our services to have equipment that is safe and meets their needs.

"If a patient or family has any concerns, we encourage them to contact the service so we can look into the concerns and offer our support."

Follow BBC Shropshire on BBC Sounds, Facebook, X and Instagram.