Eddie’s Story

Eddie Braun is a loud, sometimes cheeky four-year-old who is determined to let his mum know exactly what he wants.

His default setting is happiness, despite the numerous challenges he faces. He absolutely loves cycling and swimming.

Eddie has an ultra-rare genetic condition caused by the genetic mutation COL4A2 which is linked to small blood vessel disease. For Eddie this means he had at least one bleed on the brain before he was even born, resulting in brain damage. This in turn has meant he is registered as severely sight impaired, he has cerebral palsy, global developmental delay and complex epilepsy.

The Sandcastle Trust awarded the Braun family a holiday at Bluestone, a holiday park, in Pembrokeshire, Wales, for a week.

Eddie’s mum, Ilmarie, says: “It was one of the first times we have been away just the four of us – just us as a family. I’m sure without The Sandcastle Trust we would never have done it.

“We wouldn’t have been able to budget for it. Financially it is difficult because I’m not working. And also because increasingly there aren’t many things we can do easily as a family.

“I have to be available to take care of Eddie and to get him to all of his appointments. In one week alone he had nine appointments with the NHS.

“There have been periods where Eddie has had 10 clusters of spasms (seizures) a day. At the moment I can’t work because if Eddie has a bad run of seizures, he needs to go to hospital. It took us a long time but thankfully we have got better seizure control now, although he still has seizures every day.”

Ilmarie, 42, explains: “It was really easy to apply to the Sandcastle Trust and they were so lovely to deal with. The whole process removed any stress – which is brilliant when you are looking after a profoundly disabled child.”

Ilmarie, who is married to Alex Braun, also 42, a builder, lives in Chester with Eddie and his older brother, Thomas, eight years old.

She continues: “What was so special about the week The Sandcastle Trust gave us was our two sons got to share a bedroom and enjoy activities together.

“Thomas absolutely adores Eddie, but most of the time in order for him to enjoy anything resembling what other eight-year-olds do, one of us has to take him away and the other parent stays with Eddie. Our little family is split in two most of the time as a result.

“Thomas’s whole life has been impacted since Eddie was born. It is very hard for the siblings of disabled children.

“We never thought we’d be able to have the boys sharing a room and just to be able to go out on the bikes together in a safe environment and head to the swimming pool – sometimes more than once a day was incredible.”

Eddie is profoundly disabled and while he can feed himself, his food needs to be cut up for him.

Ilmarie continues: “Bluestone is so well organized we even managed to eat out twice. It was such a treat not to have to think about the shopping, cooking and clearing up.

“The trip was perfect. It allowed us to reconnect as a family and have a little bit of a breather too.

“It has given Alex and I the confidence to feel we could do the same kind of trip again.

“For any other families out there who are in desperate need of a break. Have a look at The Sandcastle Trust. They helped us do the normal things that other families do and gave us a chance to spend quality time together again.”