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20th November 2015

Who needs Superman when you’ve got Dan McLellan for a brother?

Charlie McLellan had a simple assignment at school: describe your hero. He chose his 6-year-old brother Dan, who has a rare form of muscular dystrophy.

“He is special to me because he has poorly muscles but he doesn’t complain at all,” 8-year-old Charlie explains on his homework sheet, which goes on to describe his brother as “determined, kind, cheerful and talented.” If ever there was a way to embody the spirit of the UN’s Universal Children’s Day, this is it.

When Dan was a toddler, his parents James and Debra grew concerned because he seemed to be behind schedule with learning how to walk. At age three, after “many blood tests, two muscle biopsies, two magnetic resonance imaging scans and countless doctors/consultants pouring over him, pulling and prodding him about,” James says they got the devastating news that Dan had a genetic condition called Ullrich congenital muscular dystrophy (CMD).

This particular form of CMD is caused by the lack of a vital protein that acts as a scaffold supporting the muscle cells. Over time, a sufferer’s muscles weaken and waste, leading to increasing disability. Dan is one of the estimated 250 people in the UK who have Ullrich CMD. There is currently no treatment available to target the underlying genetic cause but charities such as Muscular Dystrophy UK are funding research aimed at finding a treatment.

There are ways to alleviate, to some extent, the effects of Ullrich CMD. In Dan’s case, he has regular occupational therapy to help him with practical everyday activities, as well as physiotherapy and hydrotherapy to exercise and stretch his muscles. In addition, “Dan sleeps in a profiling bed which has been great enabling him to read a book at night time. He has leg gaiters and night splints for providing additional passive stretches as he sleeps. Dan also uses an electric wheelchair as and when he needs it at school now and when we go out,” James explains.

So what’s day-to-day life like in the McLellan family? “A normal day involves being hands on with Dan from the off,” James tells This Is Medtech. “Dan often needs help getting out of bed, he cannot climb stairs or dress himself and needs a lot of adult support. Dan is not able to get in and out of the car safely on his own and getting to the toilet is also very difficult for him,” he adds.

James, Debra and Charlie work hard to ensure their life is as inclusive as possible for Dan. This means keeping play and activities off the floor at home because it’s hard for him to move around easily. In the garden, Dan wears a protective helmet to protect against falls. “He still falls quite regularly and without saving reactions/strength, his head takes the impact. When out and about, we tend to limit the distance Dan has to cover from car to activity. He is still walking, but does get tired and this is when he is at higher risk of injury. We avoid long walks, cannot go hiking, but we do go biking with Dan’s specialised trike,” says James.

Despite all of the medical procedures and doctors’ appointments, James says his son never grumbles. “In fact he entertains them all at just about every turn. We often think of all he has to endure in his daily life and we are constantly reminded how truly amazing our wonderful boy is.”

As for the future, nobody knows how quickly things will change for Dan, but the nature of the condition means that he’ll eventually lose his mobility and need respiratory care at night as the condition attacks his lungs.

James fully admits that coming to terms with the diagnosis has been hard from a parent’s perspective, but says that it hurts most seeing Dan having to struggle. “Our gorgeous boy doesn’t deserve this! We will never give up the fight or hope that a cure will be found.”

To this end, the McLellans have set up a charity called Dan’s Hope, which aims to raise as much money as possible to help children like Dan who suffer from MD.