Local girl Carmela who also receives respite from Julia's House Children's Hospice, has a rare progressive muscle wasting disease, shortening her life to around 16 or less. Carmela is a fighter and is determined to stay mobile and enjoy her short life - but it costs!
Your Friendly Neighbourhood Milkman!
With great milk deliveries must also come great responsibilities! They say don’t mix business with pleasure, I’m a milkman, we don’t play by the rules! I also write our local what’s-on/entertainment website Devizine. Being I get quite a few strange looks, this day and age, trundling around in a milk float, it wouldn’t make the slightest difference if I did it dressed in my Spiderman onesie; would it?
I asked our Devizine readers if they’d dare me to do just that. The poll showed a slim majority (98%!) dared me to do my milk round dressed in my Spiderman onesie! So, I accepted the challenge, provided we raise some funds for Carmela, a five-year-old girl from Lavington with a very rare form of muscular dystrophy called LMNA Congenital Muscular Dystrophy.
It is a progressive muscle wasting disease that weakens the skeletal muscles to the point of relying on a powerchair full time and someone to do everything for her. The heart and lungs are affected too. LMNA-CMD is incredibly rare with around only 50 known cases in the UK. Many years ago, affected children would typically die before the age of ten from respiratory and heart complications, but modern intervention has seen an increase in life expectancy. Carmela now has a 60-70% chance of living to sixteen. If lucky, she could make it to her twenties.
There is no cure or treatment to slow down the disease but to help with the discomfort, pain and stiffness that comes with a progressive muscle wasting disease, Carmela requires daily mobility and stretching exercises, massages, hydrotherapy, swimming, and cycling using an adapted trike for low tone children. As her disease weakens her, adaptations in the garden and specialist equipment will change, costing in the thousands. For more information on Carmela see here: http://www.carmelasstanduptomusculardystrophy.co.uk/
My spider-senses are tingling, telling me I’m got to this, on Friday 9th August, weather permitting. I will take some photos and make a video diary of my morning, travelling through: Potterne, Worton, Great Cheverall, The Lavingtons, Easterton, Urchfont, Chirton, Patney, Beechingstoke, Woodborough and back into Devizes, before returning to Plank’s Dairy in Poulshot. I’ll also try a live stream to our Facebook page for the last part of the journey, and Carmela may join me at some point too! If this isn’t enough proof for you, I plan to stop outside the Bear Hotel in Devizes, Friday mid-morning where you can meet and laugh, I mean cheer me on!
On the day, you should be able to track my progress on the Devizine Facebook page, and I’ll announce an ETA back into town; do, if you can support me, there will also be a bucket for donations, or you can use this donation page here.