An Alfreton woman whose two grandchildren both suffer from a rare genetic condition is to host a fundraising event to raise awareness of the ‘horrible’ disease.
Five-year-old Chloe and two-year-old Macie both have mitochondrial disease, a rare genetic condition which is both life-limiting and incurable.
Now, their grandmother, Cheryl Williamson, will host the Lily Foundation Christmas Bash at Dukes Barn in Beeley on November 26 to raise money for the charity which supports people with the disease.
She said: “We are hoping to have a really fun day. We have already raised £500 for the Lily Foundation and I think we’ll probably get up to more than £1000 after the party.
“We think the kids will love it and we are even getting Santa to come possible on a truck donated by Lockwood Haulage.
As well as the Santa visit, the event - which will run between 1-5pm - will feature tombolas, a raffle, stalls selling tea, coffee and cakes and much more.
All proceeds will go to the Lily Foundation which raises money for research and gives support to families that have children with mitochondrial disease.
Cheryl, 46, says Chloe and Macie suffer ‘dreadful effects’ from the illness including deafness, muscle problems, and kidney issues to name but a few.
Five-year-old Chloe has had to have cochlear implants so she can hear and will need a kidney transplant at some point in the future.
She also becomes tired easily and has one-to-one help at school to help her get through the day.
“It is juts a horrible disease,” says Cheryl.
“With Chloe we originally found out she was profoundly deaf which was obviously very upsetting but then she kept on getting different viruses and we just thought something’s not right here.
“She now has to be fed through her tummy and she suffers with other problems as well - she has had to have a lot of hospital visits.
“Unfortunately, Macie has the disease as well but isn’t too bad at the moment, thankfully.”
To find out more about the event or to donate money or prizes call Cheryl on 07475 827815, email firstname.lastname@example.org or visit www.facebook.com/events/1136994003032276.
To find out more about the Lily Foundation and mitochondrial disease visit www.thelilyfoundation.org.uk.