I grew up knowing everything
20 June 2012Hannah, who is raising money for the charity by taking part in an overseas trek in Kilimanjaro, decided to support the Muscular Dystrophy Campaign in memory of her brother who was diagnosed with Duchenne muscular dystrophy.
Greg was my younger brother, by 18 months. He was born on 21 January 1986, and died on 28 August 2005, aged just 19 years.
Without wanting to sound soppy, he was my best friend, we spent all our time at home together, and I feel that he could talk to me about his worries (generally and also about his condition) more than he could with anyone else. Greg employed me as his personal carer, once I had graduated from university in June 2005, so we were able to spend his last few months together, and I remember us laughing about how I was getting paid by him to sit and watch DVDs!
I never slept on an argument, firstly with him and then with anyone I know, as you never know if that person will be there when you wake up in the morning and that is something I still hold to now.
Both Greg and I grew up knowing everything about muscular dystrophy, our parents believed that honesty was the best policy and that we were intelligent enough people to be able to understand what it meant. We both knew that Greg would not live a full lifetime, and was given a life expectancy of about 15 years. I think that as he got older it meant that I never slept on an argument, firstly with him and then with anyone I know, as you never know if that person will be there when you wake up in the morning and that is something I still hold to now.
He grew up knowing that he wasn't as strong or as fast as other children his age. He was never a victim, sometimes a little too much the other way and didn't like to be helped if he thought he could do something on his own. Greg was extremely stubborn.
Greg's interests involved most things that young boys and teenagers do, playing video games and watching DVDs. We had a friend, Rob, who used to come round with his Playstation games and steering wheel and we would all play driving games for hours, with Greg shouting directions at us! Due to his obsession with films we have amassed quite a collection of DVDs, our house looks like Blockbuster, but as a family it was something we were all interested in and could do together.
Greg was extremely clever; he was interested in a wide array of subjects from science, art, to history. His knowledge recall was brilliant and he was a dab hand at pub quizzes, I think the local pub dreaded our family coming in because we managed to win more often than not.
He stopped walking when he was 5 years old after falling on a holiday and cutting his head quite badly. I remember him telling my Mum, 'I don't want to walk anymore' and he didn't.
I was only four years old when Greg was diagnosed. The Muscular Dystrophy Campaign gave me a book, 'Hey! I'm here too!' that was for siblings of children with muscular dystrophy. A lot of the time I had to look after myself and I had quite a few feelings about my situation which no-one else seemed to understand. The book really helped me to see that what was happening was not my fault, it was nothing to do with me and that my parents didn't love me any less just because they spent more time looking after Greg. It really helped me to come to terms with my position in the whole situation, and I think my relationship with my brother benefited from it in the long term.
The Muscular Dystrophy Campaign is particularly special to me as it was supportive of my family after my brother's initial diagnosis. The charity gave my parents the information and direction they really needed when Greg was first diagnosed. As muscular dystrophy is relatively rare the medical professionals were not as knowledgeable about it as they would have been with other conditions. The Muscular Dystrophy Campaign offered my parents advice and directed them to organisations which would help with all the equipment Greg would require as he got older.
I wanted to support the Muscular Dystrophy Campaign to increase awareness of muscular dystrophy, and to raise money to fund research into new treatments and hopefully a cure for all forms of the disease.
I hope there will come a time when no-one will have to have the disease and suffer its effects. Families such as mine won't be forced to remember people they have lost because medical science would have been able to cure them. I look forward to the day this becomes a reality. Unfortunately it will be too late for Greg but I hope that a medical breakthrough is found soon.
The Kilimanjaro Trek particularly appealed to me because it is something I have always wanted to do, and never thought I would get the opportunity. Reaching that summit, and knowing that I have done it for a good cause, will be something I will remember for the rest of my life, and something I can be proud to have achieved.
I think that Greg has inspired me in the sense that he had quite a stubborn and determined attitude. If something was difficult or painful he would persevere until it was done. Following his example I always try to get the most out of life, and jump at any opportunity which presents itself, such as joining this trek. It sounds cheesy and clichéd but he lived everyday like it was his last and I try to do the same.
Please support Hannah by making a donation on her fundraising page and help us continue our vital work.
The Muscular Dystrophy Campaign has been supporting families affected by Duchenne muscular dystrophy since 1959 funding research to find a treatment for this devastating life-limiting condition. The Muscular Dystrophy Campaign has invested more than one million pounds into the development of exon skipping therapies over the past 20 years leading to encouraging results. With your help we can continue to fund research which might produce a treatment within the decade.
Comments (1)
Hannah,
Your story had me in tears. My brother has DMD also
I feel like everyday I'm surprised he has this disease.
I hope they'll be a cure someday!!