Family tells of daily pain for ‘trapped’ Lydia

Lydia Rankin, two, with parents Ruth and Paul Rankin - Lydia has severe disabilities.
Lydia Rankin, two, with parents Ruth and Paul Rankin - Lydia has severe disabilities.

A Wigan mum has spoken about her severely disabled daughter’s daily struggles after outgrowing her specialist equipment.

Lydia Rankin could be spending most of her school summer holidays trapped at home in Pemberton, sitting on her mum’s lap.

The six-year-old has a condition called Alobar Holoprosencephaly, which leads to fluid accumulating in her brain resulting in brain abnormalities - and has a shunt fitted which drains the excess fluid from her brain.

Her wheelchair is so uncomfortable that she can only tolerate it for half an hour before she cries out in pain.

Her mum Ruth said: “She has had a major growth spurt and her wheelchair doesn’t fit her body shape any more.

“If she is in her wheelchair too long, she gets so uncomfortable that she is physically sick. It’s a long, drawn-out processing going backwards and forwards to Wheelchair Services to get a review of her needs and I don’t feel we are getting anywhere at the moment.”

Ruth added: “Lydia can’t be left on the settee on her own because she would fall off and hurt herself, so she currently sits for hours at a time in my lap, with me supporting her head and body.

“This is going to make everyday life especially difficult during the long school holidays.”

Ruth has praised the support from Newlife, a charity changing the lives of disabled and terminally ill children across the UK, by providing thousands of items of equipment every year.

“Newlife has been hugely supportive of Lydia and our family over a number of years, providing a special-needs bed and car seat to help us care for her,” Ruth said.

“When statutory services told us, once again, that they couldn’t help, Newlife was our only option.”

The charity is now calling on local residents to help fund specialist comfy seating for Lydia, called a P-Pod.

The P-Pod will cost over £2,000 and provides postural support so that Lydia can help sit better.

If you think you could help free Lydia from her pain over the summer holidays, go to newlifecharity.co.uk/greatermanchester, click on Lydia’s story and donate, or contact Newlife Supporter Relations Team on 01543 462777.

Any money raised over and above what is needed for Lydia will be used to provide specialist equipment for other disabled and terminally ill children in Greater Manchester.