Eben’s mum, Helen, shares why the whole family get involved in Go Bright and their bright-tastic plans for next year.
“Go Bright helps my son find his voice and talk about the community he’s part of”
Eben has always stood out from the crowd. He was born with a full head of hair and started talking from an early age. He was even able to make animal impressions from the age of one. Eben has a magnetic personality and makes friends with everyone, especially those who like dinosaurs as much as him! Go Bright is a great way for Eben to gain confidence in asking about his condition if he wants to, as well as supporting him to find his voice and talk about the amazing community he is part of.
Adapting to a ‘new’ family life after Eben’s diagnosis
It was a huge shock when Eben was diagnosed with Ullrich congenital muscular dystrophy. We’ve spent the last three years coming to terms with this as a family and adapting to what our ‘new’ life looks like. Eben’s condition means he’s unable to walk. He uses a trike to get around at home and school, as well as having a power wheelchair for longer outings. Ullrich affects Eben’s strength, so he has to find alternative ways to do things which means he’s already a great problem solver at just five years old.
As a family, we’ve also had to find alternative ways of doing things and have definitely become better at planning! Organising holidays, places to stay and where to meet friends has an extra layer of thought attached to it now Eben’s using his powerchair. We plan ahead as much as we can so we all have the best time and Eben isn’t faced with inaccessibility.
We lead a pretty normal life at home. Of course there are extra things to do like stretching, getting Eben in his standing frame and moving him around but that’s normal to us – we don’t know life any differently. We have items in the house to help Eben complete everyday tasks himself so he can be as independent as possible. It’s also important we find ways to maximise his movement to keep the muscle strength he has.
Finding accessible hobbies
Eben LOVES dinosaurs! He’s really interested in animals and science too which he’s passed onto his little sister Lyra. Yorkshire Wildlife Park is a firm favourite in our house. It’s really accessible so it’s a great day out for everyone. Family days out often consist of a trip to the zoo, safari park or the aquarium. He has a real interest in learning about the animals and we have hours of fun when he recalls all the facts he’s learnt.
“Playing powerchair football every Saturday is also something Eben loves. It’s great for him to be involved in sport and he has a great time telling us about all the goals he scores!”
Go Bright to raise awareness
This will be our third year participating in Go Bright. The first was just after Eben’s diagnosis; we didn’t know a lot about the wonderful community at that point but dressed bright to feel connected.
By the second year we were much more involved with the charity and community. Eben organised a Go Bright event in his class where everyone dressed bright and the teachers read a variety of books focused on inclusion. I organised an event at work to raise awareness of muscular dystrophy. This included a bake sale which raised £900 to kick start our peddle paddle peak team ahead of July.
“We’re planning to go bigger and brighter than ever this year! We hope to extend Go Bright to a school wide event for Eben, as well as getting Lyra’s nursery involved too.”
I’m sure we’ll organise something at our workplaces too; as chair of our disability focus group, it’s a great platform to raise awareness of Eben’s condition.
Go Bright is an event that we all love getting stuck into. In Eben’s words “my muscles work differently. I love that you can wear bright clothes, show what you want to show and celebrate what I can do.”
For us, it’s great his friends understand his condition and have fun while learning about it and can support him if he needs to ask for help.
Get involved with Go Bright
Join us in March
Feel good, fundraise and make a real impact!
Dress up party or colourful fashion contest? Wear your boldest, brightest look in March. Help brighten the future for people living in the UK with a muscle wasting condition.
