Help give Lloyd the holiday of a lifetime

Lloyd Penman has a rare genetic disorder.
Lloyd Penman has a rare genetic disorder.

A fundraising page has been set up to help send a 20-month-old Kennoway boy with a rare genetic disorder on a once-in-a-lifetime trip to Disney World.

Lloyd Penman has STXBP1 encephalopathy with epilepsy – a rare disorder which it is thought affects around 300 people across the world, and a few in Scotland.

The disorder, which was only diagnosed less than a month ago, has caused Lloyd to have around 600 seizures in two years, and could cause developmental issues in the future, as well as autism.

In response to the diagnosis, a fundraising page has been set up to help fund a trip to Disney World for a meet and greet day later this year.

As well as giving Lloyd the chance to enjoy the magic of Disney, it will also give parents Amber and Sean the chance to meet other families with children who have the same disorder.

Around 60 families will be meeting at Disney World in May, giving them the chance to share their stories and exchange information about the disorder.

Lloyd will also get to play with other children with the disorder, as well as hanging out with some iconic Disney characters.

Lisa Bremner, who set up the fundraising page, explained: “The campaign has been launched because there’s not a lot of information on the condition.

“Amber joined a Facebook page and a guy in America set up an event at Disney World, and there’s around 60 families going.

“It means they can get together, share information, ask questions.

“They can see what is in store for Lloyd in the future.”

At the time of writing, £1845 has been donated and an overall target has been set at £5000.

While the event itself has been paid for, the funds are needed to cover other expenses such as flights and insurance.

As well as setting up the page for donations, events have been organised to raise funds, including a skydive for Amber.

Lisa said that as well as raising funds, the page was set up to help raise awareness of the disorder.

“We want to get the information out there,” she explained.

“If we can help someone else get a proper diagnosis, even if it’s just one other family, that would be great.”

If you would like to make a donation and support the family, visit www.gofundme.com/help-lloyd-get-to-disneyworld.