Campaign for wheelchair-friendly van for family of Thornton girl with terminal illness

The parents of a little girl with a serious degenerative illness are in a battle to try and slow down its progression in any way they can.

Chris and Cheryl Gregson, of Thornton, both 42, were devastated after being told three years ago that their daughter, Mabel, had Batten Disease – an incurable illness which affects the nervous system.

It started with unexpected seizures, followed by the shock diagnosis that Mabel’s condition was severe and ultimately life-shortening.

Now friends ae rallying round to try to obtain special wheelchair-friendly transport as the family struggles with the oncome of more serious symptoms.

Cheryl, a marketing and communications officer, said they were completely terrified of watching Mabel, who is now aged seven, go downhill, as life expectancy is often between just five and 10 years old.

Mabel’s devoted parents have managed to ensure she is receiving regular enzyme therapy at Royal Manchester Children’s Hospital, which will not cure her but at least is slowing down the symptoms.

However, Mabel’s condition has sadly deteriorated in the past 18 months and the youngster has now lost the ability to walk and talk and struggles with drinking and eating. She has to use a wheelchair to get around.

Chris and Cheryl, who have an older daughter called Maisie, desperately need a wheelchair accessible van, because they are now struggling to get Mabel in and out of the car and fear that soon they won’t be able to at all.

In a major show of support, seven of Cheryl’s friends have vowed to tackle a tough 15k assault course challenge called the Tough Mudder next month, and Cheryl has agreed to take part as well.

The event takes place at Tatton Park in Cheshire on Saturday, October 10.

They have set up a GoFundMe page to support the campaign and have so far raised £5,256 of their £10K target.

Those taking part are Gemma Wright, Chloe Sumner, Emma Coppock, Faye Ioannou, Laura Parker, Lauren Slack and Melanie Taylor.

Cheryl said: “The worst thing is knowing that Mabel will get worse – one of the symptoms is eyesight degeneration and eventual blindness and that’s what we fear next.

“We’ve tried to get treatment at Great Ormond Street Hospital which might help with that too, we’re just waiting to see how things go.

“Some of my very good friends, who I have known for years, knew we were struggling with the wheelchair and the car and came up with the idea of the Tough Mudder as a way of raising funds for a van.

“It was a bit of a joke at first but they said they’d do it and they persuaded me to join in! We’ve all been training, with runs and fitness classes.

“We’ve all said that we’ll start together and finish together on the day. I don’t think we’ll break any records but as long as we finish it!”

The friends wrote on their GoFundMe page: “We have all known Cheryl since school and then also Chris when they met nine years ago, she is our best friend and one of the good ones – as is her lovely husband Chris and Mabel’s big sister Maisie.

“Three years ago, their whole world was turned upside down when their four year old daughter Mabel was diagnosed with Batten Disease.

“We have decided as a group alongside Cheryl to complete the Tough Mudder to raise awareness of Batten Disease and funds for a wheelchair accessible van.

“The van will give them the freedom to take Mabel out in her wheelchair. So if you are able, please give what you can – any donation whether big or small I know will be hugely appreciated.”

Batten Disease is the common name for a group of rare disorders known as neuronal ceroid lipofuscinoses (NCLs).

In these conditions, fatty-protein waste products called lipopigments build up inside the body’s cells, particularly in the brain and eyes.

This toxic buildup damages neurons (nerve cells), leading to a continuous loss of physical and mental capabilities.

Symptoms include progressive vision loss leading to blindness; seizures that worsen over time; clumsiness, stumbling, or loss of motor coordination; personality and behavior changes, learning slowdowns, or cognitive decline; speech and language problems (such as repeating words or speech delay).

Cheryl added: “I’m really grateful to my friends for their support and for all the help we’ve received from fundraisers and support in the last three years.

“The kindness people have shown has been really humbling and overwhelming.”

To help with the campaign visit: https://www.gofundme.com/f/tough-mudder-fund-raiser-for-mabel-and-her-family