Saturday, March 14, 2015

Duchenne Muscular Dystrophy: A Father's Fight to Raise Awareness For DMD


By Michelle Nardi
The Boxing Glove Editor


Darren Powell and Robin Reid
 In Northwest England there is something very special going on that started out as a concept to get people healthy and fit. In 2010, a 10-week program was developed by Steve Shewan that enabled “people from all backgrounds and abilities the opportunity to get involved in boxing in a professional and controlled environment.” There is nothing unusual about a fitness program such as this, you see them all of the time popping up around the world, especially in the UK, where people incorporate boxing into their daily workout to burn fat and get in shape. People can be very competitive, it is what pushes industry forward and makes personal growth of an individual climb to great heights. When the element of competition in the boxing ring is added to the concept, called White Collar Boxing, along with the ability to raise funds for a charity of the competitor’s choice, something very special has been created at Funkin Fitness. This gym is where we find the unique and inspiring stories of people that are working very hard to not only change their world, but to help those in need, change theirs. 

Gavin Powell
Earlier in the year, I had written about Gavin Powell, a man from Crewe, England, who was fighting and raising funds for the Teenage Cancer Trust. Gavin and his brother Darren joined Funkin Fitness in 2014. While Gavin was not quite ready to compete for his boxing debut that year, Darren, his brother, did get into the ring and make his boxing debut. According to head trainer, Steve Shewan, “Gavin’s brother Darren fought on the last show and raised approximately £1,450 for Muscular Dystrophy. Some over achieve, some under achieve, but as long as they make an effort then it’s fine. To give you a little bit of insight on Gavin and his brother, Darren, they are both big heavy lads. I remember the first night they started. They had to stop every 2 minutes to rest, and both said they were feelin’ a bit like spare parts as they struggled to do anything. Move forward several weeks and their persistence paid off, they now train well and help the novices out.” 

Gavin is developing and almost ready for his boxing debut at the event that is happening on March 28th, where Funkin Fitness is hosting the White Collar Boxing charity event at the Studio Night Club in Nantwitch, Cheshire, England. The event itself is set up where novices take part in a 10-week vigorous training program that concludes with an opportunity to step into the ring. There are three rounds, with each round lasting two minutes. Each team member who chooses to participate in the White Collar Boxing events has to commit to raise the minimum donations of  £100 for a charity. Gavin has reached his goal of £100.00 and is currently at £257.00, but is still trying very hard to raise that amount to help his cause. He recently gave an update, “training’s going brill, feeling sharper n’ fitter than I have ever felt! It's time to complete my final step and do the fight. I’ve chosen my fight entrance song to so I'm all ready pretty much now all ready. I kind of got a charity lined up for the next fight I do.”

“The reason I did my boxing matches is my son has a terminal illness called Duchenne muscular dystrophy which is life limiting...”

I cannot help but think of two iconic images that remind me of these two brothers. The lion cub and a boy staring into a long mirror, the lion cub sees a mighty lion roaring, and the boy sees an image of Muhammad Ali with boxing gloves, ready to strike!

Lewis Powell
It was Gavin who reached out to share the two brother’s story, but Darren also contacted me to give a simple ‘thank you’ and to tell me that he appreciated The Boxing Glove giving attention to the White Collar Boxing event and for writing his brother’s story. This is where I discovered that 42 year-old Darren Powell was not just a competitor who was doing a simple deed to help a charity, but his own life story is one that has been directly affected by a crippling disease. With the words “The reason I did my boxing matches is my son has a terminal illness called Duchenne muscular dystrophy which is life limiting” I knew that Darren was a man on a mission that was far more meaningful that competing in a boxing match to get in shape.

Duchenne Muscular Dystrophy (DMD) is one of nine types of muscular dystrophy. The absence of a protein, dystrophin, that helps the muscles remain complete, is the cause of DMD. Progressive muscle weakness and degeneration characterize this genetic disorder that usually begins in at an early age (3-5 years old) and mainly affects boys. It is rare for a girl to be affected. This disease is progressive and will generally begin with muscle weakness in shoulders, arms, hips, pelvic area, and thighs. This generally makes it difficult for people to do simple tasks as getting up and down, raising their arms, and going up stairs. As the disease progresses, it begins to affect the muscles of the heart and respiratory system.

Named after the French neurologist Guillaume Benjamin Amand Duchenne who first described DMD the in the 1860s, it took roughly a century for researchers to discover more about this disease. In 1986, researchers, who were supported by the organization MDA, were able to identify a gene that is particularly located on the X chromosome. If this gene is damaged or changed it could lead to DMD. Further research in 1987 identified the protein associated with this gene and discovered the lack of this protein makes the muscle cells more likely to be damaged or weakened. 

"Children with DMD were not expected to live past their teen years..."

Children with DMD were not expected to live past their teen years, but, thanks to research that has been going on since the late 1980s, the life expectancy has increased for many young adults who have this disease. The life expectancy for these children who have DMD has increased through the years and many boys have not only lived past their teen years, but some have gone to college, married, and lived into their 50s.

Lewis Powell Showing his Support
Darren’s son, Lewis, has DMD, and is having his own personal war with this debilitating disease. “My son is now 13 and in a power wheelchair. He now cannot walk and his movement is very limited; he has to regularly travel to Alder Hey Children's hospital to see specialists regarding his condition. He is waiting on a major operation to have steel rods put in his spine to keep his back straight, as he now has curvature of spine. I have four daughters besides Lewis and my wonderful wife who is a rock for my son. It can be very challenging at times, but also very rewarding to have such a special son who I am immensely proud of.”

There will also be an auction held later in the year by Macmillan and Leighton Hospitals to auction boxing gloves that Robin Reid, former World Super Middleweight Champion, had signed for Darren. Robin Reid had participated in the last White Collar Boxing event with Funkin Fitness as a guest referee and has become a hero to many of the competitors that are inspired by his generosity. Again, Robin Reid has agreed to be a guest referee for the upcoming show.


 “ I would like to give a big shout out to Robin Reid..."

Although not competing this time in the White Collar Boxing event on March 28th, Darren, ever-grateful to the people who have been part of his training and success goes on to say “ I would like to give a big shout out to Robin Reid who was our special guest referee on the night, and was a true sportsmen and gent for signing two boxing gloves for me. One, I have donated to Macmillan cancer unit at Leighton Hospital, which they will be auctioned. Also, the other glove will raise funds for a much-needed body-scanning machine at Leighton Hospital. So, in all, three separate charities have gained.”

The Funkin Fitness Team

Funkin Fitness is a place that gives many people hope, drive, and when asked about the brothers Powell and other team members, Steve Shewan said “The club has grown from within. The lads who trained at the start are now the trainers and use the experience they gained to help the novices. I have novices of all ages, from 18 to 53. The atmosphere in the gym is second to none that I’ve experienced, as it’s a total group effort and the comradeship is brilliant, the guys train together and fight each other.”





 “Training with my brother Gavin Powell has made our relationship stronger and the rest of the team are fantastic to train with..."

 

The Lads Working Out at Funkin Fitness
 Family unity is what bonds many people in the face of hardship and adversity. Darren and Gavin’s commitment to create change physically in their own lives, as well as using this commitment to help others in their own life challenges is truly inspiring. In Darren and Gavin’s case, this quest for fitness has strengthened the relationship between the two brothers. Their family has pulled together to support the lads as they try to achieve their goals. “It was a fantastic experience fighting to raise money and awareness for my son Lewis Powell's life limiting condition. It is heartbreaking as a parent to watch my son deteriorate day by day!” Darren goes on to praise his team and brother “Training with my brother Gavin Powell has made our relationship stronger and the rest of the team are fantastic to train with. I managed to raise a lot of money on the night and can’t thank my friends and family enough for their generosity and support.”

“How far that little candle throws his beams! So shines a good deed in a weary world."


Steven Shewan has worked to put together a great event that has brought a community together, that not only supports their hometown heroes, but gives them the opportunity to give support to people around the world who have life challenges. Like the salt that has been mined in Nantwich, England, for hundreds of years, the people training at Funkin Fitness and those involved with creating a catalyst for change and awareness, are also the salt of the earth.

The next White Collar Boxing event will take place on Saturday, March 28, 2015, at the Studio Night Club in Nantwitch, Cheshire. 

Tickets for the boxing night cost £20 each and are available by calling 07766 644222 or by emailing Steve@funkinfitness.com. Funkin Fitness on Facebook: https://www.facebook.com/funkinfitness


To donate to the Macmillan Cancer Support, visit: https://www.justgiving.com/company/FunkinFitness

To support Gavin “The Power” Powell, please visit his Just Giving Page and donate today to the Teenage Cancer Trust! https://www.justgiving.com/Gavin-Powell/

To follow Funkin Fitness and to watch videos of  the progress of the team, visit their Facebook page at https://www.facebook.com/funkinfitness





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