Duchenne Patient Stories:Ryan

Duchenne Patient Stories:Ryan

“You can ask me anything. If it helps out, I’m not embarrassed. I just want to help,” Ryan says from his family home in Crewe, England. “I’m shy,” he admits. “But I work on it.”

Ryan received his diagnosis of DMD at age three. At the same time, his older brother, Ashley, was diagnosed. Ashley, now 26, was at a diabetes appointment when the doctor decided to test him for DMD. When he tested positive, Ryan was also tested. Doctors told the boys’ parents that neither of their sons would live past 17.

“It was horrible,” Ryan’s mother Tracey confesses, tears coming to her eyes. “But in a way knowing [they had Duchenne] made me nicer. I wish I knew then that it isn’t as bad as you think. Nothing is set in stone. You just keep going.”

Keeping on is exactly what the family has done, with every member cheerfully rallying around the boys, who are now well past 17. Three of Ryan’s four sisters also live in the house with Ryan, Ashley, and their parents. His 16 year old sister, Katie, has taken an active role in caring for Ryan. She does chest physio for him when he has pneumonia and knows how to operate all of his machines. “I can do it with my eyes closed,”she boasts. “I didn’t know anything was different with my brothers until I went to school and saw how other people are. Some people think that because he’s in a wheelchair, he’s backwards or something. But my friends are cool, and they understand.”

Ryan and Ashley have a healthy appetite for adventure, be it day trips near home or deep dive into the fantasy realms of movies and video games. They recently returned from a trip with their family to the Harry Potter Warner Brothers Studio in London. There they toured actual film sets and learned about some of the behind-the-scenes special effects used to make the Harry Potter movies. The only thing brighter than the camera lights were the brothers’ smiles, as they got a glimpse of the true magic behind one of their all-time favorite stories.

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Though some of his childhood passions still rule supreme, Ryan is a mature, self­-driven young man with a strong voice of his own. He is active with the North West Young Labour party, a local political organization with whom he campaigns for the rights of people with disabilities, and he is also a member of DMD Pathfinders, a UK-­based charity devoted to providing advice and support to teenagers and adults living with DMD. In college, Ryan studied politics, English, and history before he was forced to drop out due to the difficulty of finding proper care to support him while he was in school. “I’m involved politically with the Labour Party because of experiences I’ve had. I’ve had bad experiences at hospital, and with carers.” From Ryan’s challenges, he has learned how to take action and make positive things happen. Recently he had trouble operating his wheelchair because his hands were getting weaker and could no longer maneuver the main controller. When insurance wouldn’t cover the cost of the new switch and instead proposed that Ryan apply for a new chair altogether, he created a GoFundMe campaign to raise the money. Through crowdsourcing Ryan was able to buy the smaller, more sensitive controller himself and keep his chair that he knew and trusted.

Though he claims to be reserved, Ryan is equal parts kind, honest, vulnerable, rational and dedicated. These characteristics, which have been honed over the years of becoming a young adult with DMD, are useful when negotiating with Social Services for the care and support both he and his brother require. Ryan has taken control of hiring and managing his and his brother’s carers, which starts with writing a job description:

Your duties are looking after two physically disabled brothers with Duchenne muscular dystrophy within their family home. Myself and my brother that is, we are completely physically disabled and require you to be our arms and legs ... Bathing, hoisting, helping with toileting, preparing meals and feeding us, as we can’t lift our arms. Administering medication, cleaning the room, as it can affect our chest, washing up ... putting us into bed, dressing us and washing us thoroughly. We also have important medical equipment that we will show you how to use. As you can see it’s pretty much all aspects of care as guided by us. We are young adults with a physical disability. When you come for the interview we can explain everything and show you all that needs to be done. We also will need you when we go out of the house, as we are unable to do anything [physically] ourselves.

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“This condition has taught me patience. And empathy for others,” Ryan says. To any boy newly diagnosed with Duchenne, Ryan advises, “Think about what you can do rather than what you can’t do. It can be devastating to find out you have the condition. But there’s still a lot of life to live.”

“The most important thing to me right now,” Ryan explains, “is trying to achieve 24­ hour care for me and my brother. We currently are sharing a carer. After that I will dedicate my time to politics to ensure others get the support they are entitled to. My whole aim is to help as many people as possible. Politics is my life because it is so important that disabled people in the UK are looked after and further integrated into society."

"Disability is caused by the way society is organized, rather than by a person’s impairment or difference. When certain barriers are removed, disabled people can be independent and equal, with choice and control over their own lives. There is not a lot we can’t do with support.”