Rachel Wrigley lives in Barnsley in the UK and has two sons diagnosed with xlinked myotubular myopathy. She has recently started fundraising for the Myotubular Trust by making children's id bracelets and personalised dummy clips. Below she writes about her family and her fundraising.
We are a family of 7, 3 boys and 2 girls. Two of my sons, Regan aged 9 and Marconi aged 7, are diagnosed with xlinked myotubular myopathy. We arrived at the diagnosis ourselves, after much reading and research on the internet and while the doctors shared our view, it was sometime before we were able to gain a confirmed diagnosis. The mutation was identified in early 2011.
We are rather fortunate that both our boys are able to walk and breath for themselves. However Marconi has a nippy vent for night time use and while both boys are mobile, they can only manage very short distances and rely on wheelchairs to get around outdoors.
Both boys have feeding pegs (gastrostomy) to aid with feeding. Marconi is fed exclusively by tube, while Regan is able to take the bulk of his calories orally. All said and done, they are able to live and enjoy a normal life.
Regan enjoys playing on his Xbox 360, watching Top Gear or anything car related, socialising with friends and has recently started swimming lessons which he enjoys. Marconi likes going on holiday, enjoys spending time on the beach, Mario, Ben 10, Fireman Sam, games consoles, he also watches documentaries like 'How it's Made', as well as medical documentaries.
Making bracelets and dummy clips is a hobby of mine and I recently started to sell them as a way of fundraising for the Myotubular Trust, to help find a cure for myotubular myopathy, not just for my boys but for others with the condition too. I thought why not do something I enjoy doing and help a good cause.
I make them using ribbon and beads and sometimes I put little charms on them depending on what the buyer wants. I've also made some using elastic
All of the profits raised from my sales will be donated to the Myotubular Trust. My aim is to raise £500. Both the dummy clips and the bracelets cost £2.50 and postage is £1.00 but the more the people buy the less postage there will pay.
Visit Rachel's ebay pages for more information
Children's id bracelets | Personalised dummy clip