Fundraiser for Glenrothes boy's rare, life-limiting condition raises £3,500

Ruth and Lee McGarrity held a fundraiser to raise money to treat Asher’s CDKL5 deficiency disorder at Glenrothes’ CISWO on Saturday. Guests had the chance to win a variety of prizes, such as a tour of Rangers’ Ibrox Stadium and beauty and meal vouchers as well as enjoy a disco.

All funds raised will go towards continuing Asher’s alternative treatment and physiotherapy.

Ruth said: “We are both shocked, but very grateful to everyone who helped, donated or shared Asher’s story”.

Ruth also paid tribute to friend Suzie McLeod who helped organise the event.

She added: “She helps local families and organises fundraisers. Without her we would have been lost organising this.”

Asher was diagnosed at 11-weeks old with the rare and life-limiting CDKL5 deficiency disorder. The disorder affects how the body produces protein instrumental in brain development.

This has led to poor head control, poor vision and can lead to him becoming distressed.

He first began experiencing seizures at four -weeks old. These were initially diagnosed as epilepsy and then reflux. However, doctors were able to diagnose the rare disorder when his epilepsy consultant witnessed a seizure during a routine hip scan.

Asher was prescribed a variety of medications to get the seizures under control, however none were able to stop them in the long-term. Blood work conducted later showed that the deficiency is drug resistant.

Despite this, one source of relief has been CBD oil. Ruth said she saw improvements in Asher’s condition soon after giving him the alternative treatment.

She said: “A couple of weeks after starting CBD oil, he had nine days without a seizure which was the longest he had gone.”

Physiotherapy has also helped, but Ruth says it’s difficult to schedule as it has to be arranged around feeding times, nap times and Asher’s seizures.

The disorder is more common in females, but affects males more. Asher’s parents said they know of only one other Fife case, in a girl.

They are now working with Tree of Hope to ensure that they can continue to support and treat him. The charity takes any money raised on Asher’s behalf and incrementally pays it out, when bills are presented to them.

Ruth said: “It means the public knows that we aren’t just taking the money and using it for this, that and the other. If we want to get reimbursed then we have to send the receipt.

“They’ve got registered suppliers so she just invoices them directly. It’s just another thing to reassure people that their money is going to the right place”.

Asher’s parents are hopeful that developments in gene therapy currently being undertaken on lab rats will lead to an improved treatment for him.

Ruth added: “It’s proven really successful. The next steps, which they’re hoping to get to before 2025 is the clinical human trials. So we want to be ready for that.”

You can find Asher’s fundraiser at: https://www.treeofhope.org.uk/help-for-asher-mcgarrity/