Lloyd is just 20 months old. He is a beautiful, happy, loving boy who fills our lives with so much happiness, but he also fills his parents lives with fear. Fear of not knowing what the future holds for Lloyd, fear of another seizure lasting too long and, yet again, being rushed into hospital by ambulance. In his short life he has already suffered over 600 seizures, having both tonic-clonic absence seizures and myoclonic seizures.
Lloyd's parents, Amber and Sean, instinctively knew that there was something more to Lloyd's seizures than normal epilepsy. They fought for months to have the seizures properly identified, which resulted in STXBP1 being diagnosed. As the condition is so rare, they need to find out more information themselves, as the consultants and doctors don’t have the answers to all the questions Amber and Sean have.
Amber has joined a Facebook page for parents of similar children, they are all over the world, but mainly in America. Through this page, they have been invited to Disney World in May 2018 so that they can meet 60 other families that have a child with STXBP1, or ‘STXers’ as they are known. A meet and greet day has been organised by a family whose daughter has STXBP1, so that all the families can be together in one room. The kids will be able to meet each other and play together, as well as interact with Disney characters. There's also a DJ to get the kids dancing and a photographer will be on hand to document the event. The event has been fundraised by this family meaning it is free for all STXers. This will be a chance for Lloyd to have some fun, and for Amber and Sean to ask questions to the other parents, discuss what they deal with day to day, share knowledge, see other children and their abilities, and get a better understanding of what lies ahead for Lloyd.
With your kind help, we can ensure Lloyd, Amber and Sean can make this trip. Accommodation at Coronado Springs has already been discounted by Disney for this event, but with flights, insurance and all other expenses, this will still be a costly trip. Due to the short timescale between Lloyd’s diagnosis and the trip, we need to raise funds very quickly to help them get there.
Some brilliant fundraising has already been done by family and friends, with more planned in the next few months.
Amber has volunteered to do a sponsored Skydive in April.
Additional local fundraising already planned:
Bag packing at supermarkets
Sponsored walk - 14 miles!
Sponsored Bungee jumps
Sponsored Head Shave - Stacy Brown
Any donations will be gratefully received and much appreciated. Every penny helps us reach our goal.
Thank you for reading.
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