Ethan's dream to drive his pony from his wheelchair
Earlier this year we helped Ethan fulfil his dream to be able to ride his beloved pony, Bee. We spoke to his mum, Andrea, who told us about life with three disabled children and described the magical moment when Ethan's dream came true.
Andrea lives in the Wirral, Merseyside and gave up her job to become a full-time carer to her three disabled children; Ethan, 9, Brooke, 7 and Faith, 4. They all rely on specialist treatment due to their complex medical needs. It has been a difficult few years for Andrea whose husband was recently registered blind at only 34. It’s hard to comprehend that in one week, Andrea can go to up to nine hospital appointments.
Andrea is an incredibly positive and resilient person and gains inspiration and joy in seeing her three children happy. She rarely asks “Why me?”, but there are days when, overhearing parents boasting about how well their children are doing at school, it can be frustrating. For her, it’s an achievement just getting her children to school.
Congential neuromyopathy and Ehlers-Danlos syndrome
Ethan's main condition is congenital neuromyopathy, a rare muscle disorder which makes movement and walking very difficult. Ethan and his sister Brooke both also have Ehlers-Danlos syndrome (EDS). The type they have is relatively rare with only 1 in 25,000 people having the condition worldwide.
EDS is a genetic condition affecting the connective tissue in the body. Connective tissue covers over 95% of the human body and provides support in skin, tendons, ligaments, blood vessels, internal organs and bones. There are different types of EDS but common effects include joint hyper-mobility and fragile skin. As an example Andrea’s daughter, Brooke, once had a simple fall and had to have a cheek bone reconstructed. Although Ethan is often in chronic pain, there is a soul mate who makes him very happy - his pony Bee, who he has had since he was two.
“Bee just understands Ethan, they have such a unique bond and they really trust each other and adapt to each other naturally.”
Unfortunately, due to Ethan’s condition, he’s not been able to ride Bee for the past four years as sitting on her dislocated his hips and knees and sometimes his ankles. He still cares for her and can lead her around from his wheelchair. He cannot show her or take her to events however as health and safety restrictions prevent wheelchair users from participating in equine events.
When Andrea approached Dreams Come True, she could have picked a family holiday, but logistically, it would have been very difficult due to her children’s medical needs and she said it wouldn’t be relaxing.
As fate would have it, whilst thinking of a dream, Andrea read about a new product called the iBex. Straight away, she knew this would be a dream for Ethan. The iBex overcomes most of the issues which prevent disabled children riding a horse and was engineered by Nick Sanders at Rowan Oak Livery in Brecon. Nick said: “It is a contraption that gives people in wheelchairs the independence to drive ponies in full safety as it incorporates a very unique quick release system. This invention incorporates a wheelchair ramp and also a seating unit.”
With the iBex Ethan can drive his pony directly from his power chair or even be lifted and put in to the seating unit with his sisters and so that they can drive their pony together. It is an all terrain vehicle which means Andrea could take Ethan anywhere in it despite him not being able to walk or stand up. Before the dream, Andrea said: “I can only imagine Ethan’s little face laughing as he blasts through the fields with his pony pulling him along. It would enable him to get out and have fun in the fresh air all year round.”
Dreams Come True made Ethan’s dream a reality and Andrea could not believe the charity granted his wish. She describes the iBex as “life-changing” because Ethan can ride Bee on his own and this gives him freedom. The iBex, was tailor-made to fit Bee and Ethan’s wheelchair and was delivered in May.
'I'm crying because I am so happy'
When Ethan saw the iBex for the first time, there was total silence. Andrea said: “I don’t think he could quite believe what he was seeing, then a huge smile appeared and he kept saying; 'Oh mum it’s an iBex, isn’t it mum? It’s an iBex mum, tell me it’s an iBex mum'. He started laughing uncontrollably and shouting, 'Get me out of the car, get me out of the car'. He kept cruising round it in his power chair looking at every inch of detail and trying to work out how everything went together, then kept saying, 'Can we keep it please can we keep it or are we just having a trial of it?'"
After explaining to Ethan that Dreams Come True had provided the iBex for him he started to cry. Andrea asked him why he was crying and he replied: "I just cannot believe that someone would be so kind to get me an iBex for Bee....I’m crying because I am so so happy.....how do I say thank you to them?"
Bee seemed to take the iBex in her stride. Andrea said: “Bee did exactly what we thought she would do, she took to it like a pro no hesitation or problem whatsoever which is quite unusual for a pony that has never been trained to pull a vehicle. It was a very proud moment when we lifted Ethan on to it. The girls were also desperate to get on board, so poor Bee had the three children screaming and squealing behind, but she wasn’t bothered in the slightest.”
Ethan will now be able to spend all the summer holidays riding with Bee; something he never thought he would be able to do because he is reliant on his wheelchair. Andrea said to see the joy on Ethan’s face is something money can’t buy.
“I value life. I used to worry about money and trivial things, but now all that matters is that my children are happy, safe and well.”
Author: James Gunn
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