AN EPILEPSY charity has launched an ambitious fundraiser to provide potentially life-saving alarms for hundreds of anxious families.
The Muir Maxwell Trust (MMT), based in Musselburgh, already has 300 people on its waiting list for the motion-sensitive devices, which are placed under a child’s mattress to pick up on movements associated with having a seizure.
Actor Christopher Biggins helped to kick off its Charity Cupcake Challenge at the Caledonian Hotel yesterday, which will see supporters host cupcake parties for friends and family, before nominating others to hold their own.
Charity co-founder Ann Maxwell also spoke in the Scottish Parliament earlier in the day where she called on MSPs to match-fund the £250,000 her charity had pledged to raise.
Ms Maxwell, whose 18-year-old son Muir has a severe form of epilepsy, said: “Caring for a child with complex epilepsy is challenging, requiring 24-hour care. Because of the risk of night-time seizures, parents will often stay awake, take sleep shifts or sleep alongside their child, leading to massive sleep deprivation.
“An alarm gives a degree of peace of mind, the return of long-lost sleep for parents and an improved quality of life for the whole family. It offers protection to the child and is potentially life-saving.”
The charity hopes the devices will provide support for parents against sudden death in epilepsy (SUDEP) – a rare occurrence, which affects one in 1000 people with epilepsy each year.
The Evening News told yesterday how devastated parents Kenny and Kathryn Drysdale believed their 18-year-old son Jamie suffered from SUDEP after they found him dead in his bedroom in February. The sporty teenager had been taking medication for his epilepsy and had not suffered a seizure in 18 months.
MMT is calling on health chiefs to issue stronger guidance on SUDEP to medical professionals, as part of the new guidelines on treating epilepsy.
The plans, which are drawn up by SIGN (Scottish Intercollegiate Guidelines Network), are expected to be published next month.
Ms Maxwell said: “My organisation works with families with children with severe epilepsy who can be very stressed and don’t sleep because they are worried about night-time seizures.
“Many are terrified that they will go into their child’s room in the morning and find that their child is dead.
“We believe these alarms can help and I am frustrated that there isn’t more guidance on it.”
Her calls were echoed by Mid Calder resident Chris Jeans, who became an ambassador for SUDEP Action when her son, Stephen McClelland, died of epilepsy in 2010 aged 38.
She said: “During my son’s life, I was not made aware of the risk of SUDEP or that there were even such things as epilepsy alarms.
“Had I been informed, I would certainly have chosen to make use of an alarm as I believe anything that could have offered support or alerted us to the fact he was having a seizure would have given us that extra peace of mind and would have been a benefit to us all as a family.”
Currently 12,000 families in Scotland – and more than 120,000 in the UK – include children with epilepsy. To find out more about the fundraiser, visit www.charitycupcake challenge.com.