After the results of our dare, I’m going to do it, but not without your help raising some awareness of Carmela’s Stand up to Muscular Dystrophy…..
Thank you for the kind donations, we’ve made £100 so far, but Spiderman isn’t coming out to play unless we can get some more!! Please donate to my dare, whatever you can will be a great help to Carmela and her family. A big thank you to The Gazette & Herald for covering the story, and Claire Perry MP who retweeted our campaign on her Twitter page.
I was delighted today, as for the first time I met Carmela and her mum, Lucy, when they came for a visit and, if a little hot and bothered, we posed for some photos! If anything though, it’s made it feel so much more real about doing this silly thing!
Writing my rant column about Devizes on Index, some years ago now, would rattle some cages on Facebook. The satire soared over the heads of some conservative-minded individuals. One commented “don’t give up the day job.” I replied, “for the record, I love my day job,” and, weather permitting, I do.
When children say what they want to be when they’re grownup, they tend to suggest jobs they see around them, a teacher, a policeman, something like that. With a love of drinking milk, I wanted to be a milkman, among other things. I’d take the bottles out of my fridge and place them on the neighbour’s doorsteps. They’d knock our door, bottles in hand, saying, “I think he’s been at it again!”
Forward wind some decades, I figured of all the things, becoming a milkman was as unlikely as my idea to be an astronaut, being supermarkets had seen off the trade. When the job came up at Planks, I gave it a go, and after five years, never tire of it. There’s a tranquillity, a gratifying element to it beyond your average delivery driver. We are the fourth emergency service, supplying milk to those in far-flung villages who otherwise would have to travel some distance. This is warmly appreciated, particularly from the older generation, and with ecological awareness on plastic, the occupation is back in fashion.
Just so you know, Devizine is a hobby, you’ll be sadly mistaken if you think it prints money. Still, love doing this too. It became apparent when I made it a regular joke, readers thought it strange or didn’t believe I was really the milkman, so a month ago I posted video proof. 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 you all if you’d dare me to do my milk round in my Spiderman onesie!
With great milk deliveries must also come great responsibilities, never ran over a hedgehog yet; they’re too fast for me! The poll exposed a slim majority (98%!) dared me to do it. So, I half-heartedly accept the challenge, but ask you to put your money where your mouth is; think we can 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? Then, I promise, to dooooo ittttt.
LMNA-CMD is a progressive muscle wasting disease that weakens the skeletal muscles, to the point where Carmela relies on a powerchair fulltime and needs 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.
All parents live to wonder, myself included, to their children’s future and inspire and encourage their success, as I watch my daughter run rings around me, football glued to her feet, I cannot imagine what life must be like for Carmela and her family at times. Though Carmela rarely doesn’t wear a smile. I’m no superhero by wearing a Spiderman onesie, more of a loon, but Carmela is.
Mind you, I received word she prefers Wonder Woman, but to see me in blue starry hot-pants is a step too far!
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’s story, see here: http://www.carmelasstanduptomusculardystrophy.co.uk/
My spider-senses are tingling, telling me I’ve got to do 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, Marden 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!
If there is to be a gathering, and any of my musical friends are free, I’d welcome you entertaining the any gathering few with an acoustic song or two, please let me know guys!
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. Please, I know times are tough, but one thousand four hundred bods like the Facebook page, near 40,000 of you read the website annually, if everyone just gave a pound coin, it’d make a massive difference to Carmela’s life. She’s such a happy-go-lucky five-year-old, despite this condition, and refuses to let it prevent her from smiling.
Here’s the link, let’s get this to as much as we can, help me by sharing and caring! If Steve Ditko could see me now… probably cry with laughter!
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