I read a news article yesterday about a family in Telford, England that felt all too familiar. It’s not that their situation is unique. Unfortunately, it’s a story many disabled people and their families are familiar with.
Victoria and Christopher are raising their seven-year-old son, Kian, who has Lissencephaly. Lissencephaly is a group of rare neurological conditions that affect how the brain develops. Instead of forming the typical folds and grooves, the surface of the brain remains smooth, which disrupts communication between different regions. Symptoms can include seizures, difficulty eating, limited mobility, developmental delays, and poor eyesight.
Doctors had warned his parents early on that Kian might not live past two years old. His parents quickly became accustomed to caring for a child with complex needs.
The house they were initially placed in by Telford and Wrekin Council was supposed to be renovated to accommodate Kian. It wasn’t. After renovations funded by a £33,000 (~ $44,394.90) Disabled Facilities Grant, were completed they ended up with a bathtub that had such a high rim that Victoria could barely lift Kian into it.
She can only manage to bathe him in the bathtub once a week because the strain on her back is too much. More often than not, she ends up bathing him in his hospital bed because it’s the only physically manageable way to do so.
She tried to tell the builders that the planned renovations wouldn’t actually meet her son’s needs, but she felt like she was being ignored. In the end, she had to section off part of the living room and set up Kian’s hospital bed there.
Later, the council admitted that the family shouldn’t have been placed in that home. They committed to redoing the renovations. But acknowledging the problem doesn’t undo the months of physical strain or the message sent when a parent’s knowledge about their own child is dismissed.
Their struggles aren’t limited to housing. The NHS(National Health Service) provided a wheelchair for Kian. However, it doesn’t properly support his posture, doesn’t keep him safe during seizures, and can’t accommodate his medical equipment.
Christopher described having to manually support Kian’s head, worrying about his arms getting caught, and finding it hard to engage with their other children while managing a chair that simply wasn’t designed for his son’s specific needs. Eventually, they felt compelled to start a fundraiser in order for Kian to have a wheelchair that actually fits him.
Unfortunately, too many people have been in their shoes, including me. Back in 2021, I set up a GoFundMe page to cover the cost of the iLevel technology for my power chair. This feature allows me to adjust the seat height, reach things more easily, and connect with people at eye level.
My community supported me, which I’m incredibly grateful for. But it was also frustrating that my health insurance wouldn’t cover iLevel. The technology was available, and it significantly improved my independence and safety. Yet, I only have iLevel because of my fundraiser, not because of the system that was supposed to support me.
Whether it’s a family in Telford or someone navigating disability services here in the US, the underlying issue is the same. Rights mean little if they aren’t enforced, and support is not helpful if it’s not actually available.
Disabled people deserve homes that meet their needs, equipment that ensures their safety, and systems that actually listen. Getting support shouldn’t feel like a constant battle. It should be a given.
Sources:
Koenig, Matti, et al. “Lissencephaly: Update on Diagnostics and Clinical Management.” European Journal of Paediatric Neurology, vol. 35, Nov. 2021, pp. 147–152, https://doi.org/10.1016/j.ejpn.2021.09.013.SZ
Stubbs, Charlie. “We Fight for Everything to Help Our Disabled Son.” BBC News, 6 Aug. 2026. https://www.bbc.com/news/articles/cp3rx2wllq3o