Lloyd’s Disney trip is a learning experience

Family makes new friends and learns more about boy’s rare condition

A Fife toddler with a condition so rare doctors know little about it has enjoyed a dream trip to Disney World.

Lloyd Penman and his parents Amber and Sean travelled to Florida to meet families of other children with STXBP1 encephalopathy.

The two-year-old is believed to be one of only 300 people worldwide with the gene mutation and has suffered hundreds of seizures in his short life.

It is also thought the condition, characterised by abnormal brain function, may leave him unable to ever walk or talk fully and with autism.

An appeal to send the family to the gathering for STXer children, as they are known, raised more than £20,000 and allowed them to learn more about what the future holds.

It has also allowed them to buy specialist equipment including a buggy, sensory equipment and garden apparatus to keep Lloyd safe at his home in Kennoway.

Amber said she and Sean wanted to thank the family, friends, local businesses and strangers “from the bottom of their hearts” who had helped make the trip a reality.

She said: “It was such a life-changing experience for us.

It was such a lifechanging experience for us. It was really upsetting but it also helped us learn.

AMBER PENMAN

“We met 60 families with children with the same condition and found out more about how life is going to be for Lloyd.

“It was really upsetting but it also helped us learn.

“Doctors can’t tell us properly how things are going to be as it’s so rare and they wanted us to go to bring information back to help them as well.

“A lot of the children can’t walk or talk and none of them could speak more than a few words or sounds. Some of them were in wheelchairs.”

Amber said the trip was also a great experience for Lloyd.

She said: “He got to meet all these children, so it was good for him. They were all so similar to him.”

Amber and Sean met youngsters who were using cannabis oil to control seizures, which they hope will be prescribed for Lloyd. She said: “He is still having a lot of seizures. There are days he can’t walk, he is shaky on his feet and goes back to crawling.

“He is showing a lot of signs of autism and he still doesn’t speak. His development is really delayed.”

The family still have some of the funds raised, which they intend to use to meet Lloyd’s needs in the future.

They also hope to go on a second trip with the families they met and who they remain in contact with.

Fundraising continues and Sean’s uncle Jock McInnes, of Scone, is heading to Romania to climb Mt Mol dove a nu. Jock, 62, aims to scale the 8,346ft peak in his kilt and plant a Saltire at the top.

It was Amber’s cousin Lisa Bremner who launched the campaign and initiatives have included coffee mornings, bungee jumps and sky dives.

Two-year-old Lloyd Penman was delighted to meet Mickey Mouse on a dream trip to Disney World, which also helped his parents learn more about his rare condition.