Monday, 27 May 2013

100 Orange Roses

I am working on a big project for August, a yarn bomb with a Garden theme to raise money for the Muscular Dystrophy Campaign. You can find details here.

As most of you will know in 2012 I went through a tough time, deciding to "come out" as an adult victim of child sexual abuse. Deciding to go public was incredibly hard, and I struggled with this decision. One person became my confidante and my strength, Daniel. My husband finds it hard to deal with the detail, and I have had a residual fear of men, so having a man I can trust implicitly as well as my husband has been pretty key to my ongoing recovery.

Daniel happens to have Duchenne Muscular Dystrophy. I found him on Twitter because of his condition, I was interested to see what the guys with Duchenne were doing in regards to social media, and I am nosey!

One of the first things I recall Daniel saying about his condition is that he expected to live to 100. DMD is a life limiting condition, I won't go into the statistics as they make for grim reading, but suffice to say no one has ever lived to 100 with this condition. But who am I to question? Daniel lives his life with quiet positivity and determination, so why not? Daniel is currently 38 years old.

I never expected to become close friends with Daniel, visiting him several times, my family has met him and his mum, and we've become a team.

I rarely think about Daniel's condition. When I visit we chat, watch tv together, play on our computers together, and play with Joseph. DMD doesn't loom in our discussions. Yes, he is in a power chair, and uses a ventilator, but after a few minutes with him, you don't notice all that stuff.

But I do know two things. Duchenne Muscular Dystrophy needs a cure. And that men with Duchenne need a future. It can't all be about a cure. As a society we are woefuly inadequate at giving these men futures. Not just a life, but a meaningful life, employment, relationships, opportunities to thrive. Just living is not enough.

I am doing this yarn bomb as my gift to Daniel, to show him I do care, not just about him but about every boy (and the rare girl) diagnosed with Duchenne, and to leave a legacy.

When I was discussing the yarn bomb with the Muscular Dystrophy Campaign we talked about a symbolic number.... the number of people diagnosed, or death rates or some other number.

But no, in the spirit of Sadako and the Thousand paper cranes, the only number that makes sense to me is 100. 100 orange roses.

The yarn bomb entrance will be a feast of orange with the roses the central feature, and then moving into other colours and themes as you walk along.

If you would like to make something for my yarn bomb, I would be thrilled, and there will be other opportunities to help too. If you would like to blog or promote it in some way, let me know, and I am happy to link back to you.

1 comment:

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