Tag: Carmela

Carmela’s Wonder Wheels Challenge

Cyclists of all abilities are invited to ride with our inspirational fundraiser, Carmela Chillery-Watson on their very own Wonder Wheels Cycling Challenge 100km around Wiltshire.…

Carmela, who has LMNA congenital muscular dystrophy, a very rare, progressive muscle-wasting condition which affects just one in a million children around the world, relentlessly continues to raise awareness and vital funds for the cause. She is, in short, the most inspiring person I’ve ever had the pleasure to meet, and has fast become an instantly loveable public figure through her sheer determination and drive to highlight the condition of muscular dystrophy.

The condition is likely, in time, to affect Carmela’s heart and lungs and is also very likely to be life-limiting. Some children with this condition do not survive their childhood or teenage years, while some, with the help of specialist intervention, live into adulthood. However, there is no cure; Carmela’s family is intent on raising funds to help further research into treatments and a cure, to help children affected, including Carmela, to enjoy a longer life.

It’s completely free to get involved in the Wonder Wheels Cycling Challenge, but Carmela asks you to try to raise at least £150 in sponsorship, this could help improve the efficiency of clinical trials, meaning they can reach more people and get results quicker.

If you’re thinking, whoa, Nellie, 100K is too much, there are other ways to Join Carmela’s Wonder Wheels Cycling Challenge. You can join in on the 2nd July by doing a 10k at Daunstey School, starting at 9am where they have a track suitable for bikes and wheelchairs.

You could also do your own 100Km, or 10km a day if the full distance is too much, at a more suitable date and route, any time in July and set up your own JustGiving page linked to Carmela’s Charity Research Fund.

To register for any of the options click here to sign up, this will take you through to a registration page so that you can support Carmela and research into LMNA congenital muscular dystrophy.

If you can, please join the Wonder Wheels Cycling Challenge, and make a real difference for children affected by LMNA congenital muscular dystrophy. If it all sounds far too energetic for you, I know, I hear you, there are other ways to support the cause.

Recently Carmela has set up a Muscular Dystrophy Buddy Bear campaign, where you can sponsor a teddy bear for a child with muscular dystrophy. Speaking from experience, Carmela explains how she was scared and crying at all the hospital appointments and tests, and first discovering she had muscular dystrophy, so Buddy Bear aims to provide comfort for younger children in a similar situation.

Registration is still open to sign up for Wiltshire Wonder Wheels, and closes on 1st June 2023. Entries for 100km across Wiltshire are closed but 100km and 10km around Dauntsey’s athletic track are still open: 250 laps for 100km or 25 laps for 10km. There is no age limit or restrictions on abilities, even wheelchairs and adapted bikes.

SIGN UP HERE

Sponsor a Buddy Bear HERE

For more information, join Carmela’s Facebook page HERE

Carmela To Help in Local Care Home

Over three years since my most memorable “Spider-Milk-Man” run in aid of Carmela’s Stand Up to Muscular Dystrophy, it’s always nice to catch up with Carmela Chillery-Watson and her family. If I expressed then how much of an inspiration to us all Carmela is, agelessly, it was never said in a patronising manner simply because she was just six years old at the time, because she’s growing up, and surely proving my point…...

This week has seen Carmela in hospital for an operation, for a monitoring device to be implanted near her heart, and still, she comes up smiles! We all wish you the very best here at Devizine, Carmela, and of course, a very happy Christmas too, but the news Carmela plans to start helping one of our local care homes in the new year is outstanding.

Mum, Lucy explained, “on one of Carmela’s sad days a few weeks back, we discovered she was really keen to help put smiles on the elderly who can’t get outside to do sports and fun activities.”

“Carmela said she gets sad because her body won’t allow her to do lots of things she was once able to and she said her weak body is like the elderly. But having me in her life helps her to do lots of other fun stuff. So that’s why she felt she could help the elderly like I do for her.”

Carmela will be coaching bean bag boccia and fun hand sensory activities once a month after Christmas, and visited the home last week where she got to have a brief chat with one of the residents who was 99 years old. See what I mean now? She really is an inspiration to us all.

Well done, Carmela, and I just know you’re going to win their hearts!

Last August a team of fundraisers, led by Carmela’s mum, Lucy, cycled 66 miles through Wiltshire villages for Muscular Dystrophy UK, and plan to do it again in 2023. You can register your interest HERE, or you can donate to the Courageous Carmela fundraising HERE, or the Cure for Carmela HERE.

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Female of the Species Blow the Roof of The Assembly Hall, for Carmela

Entertainment events in the county blossoming out of lockdown came to a pinnacle this weekend. We were spoiled for choice, and without cloning technology the decision would’ve been a toughy for me, if it hadn’t had been for the no-brainer; the sixth annual outing of local supergroup, The Female of the Species at Melksham’s brilliant Assembly Hall.

From the moment I was pinged the lowdown on this event my heartstrings spasmed, five band’s fantastic frontwomen in their own right united for the rare, Community Civic award-winning, fundraising bonanza which has become somewhat equal in legend around these parts as a Spice Girls reunion. And perhaps what is more, the proceeds this year were directed at another personal superheroine, Carmela Chillery-Watson.

Super-heroic is a term I don’t use lightly, and not out of sympathy for Carmela’s rare strain of muscular dystrophy. Over the past two years I’ve followed the progress of Carmela and her family’s fight against this muscle-wasting condition, since mum, Lucy sent Devizine a fundraising event poster and I figured I could do more, which consequently saw me take to my milk-round dressed in my Spiderman onesie! For, now at seven years old, Carmela’s zest for life and amiable charisma is an inspiration to everyone she meets. I found it rubs off on you with immediate effect, something hordes of international celebrities have also now discovered.

Bringing this celebrity herself now back home to Wiltshire for a fundraising event, I was not only delighted to meet her and her family again, but mightily impressed with her handling of fame. Carmela responds accordingly to mounting attention, never excluding or shunning any individual yet finding the time to address them all equally; a skill many a celeb could learn from.  

With a bombardment of unfortunate planning episodes, Jools of the reggae-ska band Train to Skaville confessed, “it was a nightmare trying to get this event off the ground,” it truly became a sense of it’ll be alright on the night, and the party went off with an explosive boom. The amalgamated wealth of experience, proficiency and professionalism of The Female of the Species shone through; they are deadlier than the male.

Dedication too, to overcome obstacles, apexed by performer and musical director, Nicky Davis of bands People Like Us and the Reason, who took a fall during rehearsals to personify the performance idiom, break a leg. Frustrated by her vocal restrictions slouched at the keyboard, the second half of the show proved too tempting, and Nicky manged to make it onto her feet to sing behind the keys, rather more like Jerry Lee Lewis than Elton John in style!

But we are getting ahead of ourselves now, for full credits have to be awarded to support act, Melksham-based Plan of Action. Unbeknown to me, this male trio with a female bassist took me by surprise. Based on previous FOTS supports, I was expecting soothing acoustics, yet Plan of Action done what it suggested on the tin, and executed said plan in a hard rock fashion akin to the Foo-Fighters covers they blasted with certain precision. They then beseeched their benchmark, rather than redefined their style, to cover Wilson Pickett’s Mustang Sally in hard-edged blues fashion, and finished more retro than they started with rock classics such as Billy Idol’s Rebel Yell.

Not only did they fire up the audience superbly in preparation, but their fanbase also resolved the terror of who would be first to break the dancefloor reservations. Now there was no stopping the crowd, as Female of the Species drummer, Pip Phillips of People Like Us was first to appear, foot-peddling the bass drum to build anticipation while the girls came onstage under an impressive light show.

Second tune in, Nicky Davis led them in an accomplished cover of Hotel California, and solo soul singer Julia Hanratty followed lead on Stevie Wonder’s Superstition, as is the Female of the Species code of conduct; memorable pop covers ranging the spectrums of their individual tastes. That said, we had none of the two-tone of Jools’ Train to Skaville, although she did an outstanding lead on Deacon Blue’s Real Gone Kid.

With affections towards uncompromising rock, Charmaigne Andrews’ AC/DC Highway to Hell boosted the crowd, but not before an early highlight for me; Julia’s absolutely outstanding cover of Aretha Franklin’s Respect, something I’d not advise any singer to attempt, as with Nicky last time, who gorgeously portrayed Heard it Through the Grapevine, Julia clearly knocked this one clear out of the park.

Claire Perry of Big Mama’s Banned not only brings range to the repertoire, but witty if saucy repartee to the show, unsurpassed during the break where Carmela joined her to announce raffle prize-winners. Sporting Wonder Woman headgear for the second half, they raised the roof of the Assembly Hall, as much as they raised serious funds for the cause.

Aforementioned, Nicky stood for the second half despite her plastered leg, as they played through memorable covers, dancefloor fillers, and perfected songs you’d be excused from thinking, oh my, they’re covering that? Bohemian Rhapsody, Grease Lightening, Oh, Sweet Child of Mine, and Jacko’s Beat It for examples. Jool’s cover of Kirsty MacColl’s New England, Claire’s I’ll Put a Spell on You, Charmaigne leading on Republica’s Ready to Go, the show continued past my bus time, but I could faintly hear Mr Blue Skies while I waited!

Yeah, here’s a thing I hadn’t thought of before; escaping the Devizes westwards for the evening is surprisingly possible via public transport, and it wasn’t a drunken fallout zone, like the Boot Hill All Star’s hilarious song, Night Bus, which I imagined, rather a mediocre and tranquil bus journey!

The last bus on the 273 route leaves Bath at 11:30, and gets to the Sham at ten-to-midnight; blooming marvellous, for Melksham have a real gem with the Assembly Hall. Drinks are affordable, the service well-staffed, the atmosphere is hospitable and they’re continuing to bring outstanding shows and events to the Sham.

All in all, this show was professional yet communal, absolutely fantastic and spellbindingly electric; if another comes along, I suggest you don’t miss out. But I must finish in thanking the Female of the Species and all involved for supporting such an amazing cause, and local girl; and to Carmela, you are a superstar.

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Local Supergroup Fundraising Event for Superhero Carmela

Here’s the thing, did you realise Monday marked the second anniversary of when Wonder Woman joined me on my milk round?! Yeah, true, and we raised some wonga for her alter-ego Carmela’s fund and fight against muscular dystrophy. And now Carmela is not only a tiny best friend of mine, but huge inspiration to us all and something of celeb now too.

Star of her own fun children’s book you can buy in Devizes Books to raise funds for her campaign, as well as hobnobbing with the stars, I’m delighted this evening to hear, some other of my favourite girls are reforming their supergroup to raise some funds in her name too.

Pre-lockdown, girl members of six bands annually joined for a fundraising one-off gig, and it was always something explosive, fun and a darn awesome night. Nicky Davis from Warminster based People Like Us and The Reason, Glastonbury’s Julia Greenland from Soulville Express & Delta Swing, Frome’s Claire Perry from Big Mamma Banned & The Misfitz, solo artist Charmaigne Andrews from Melksham, and Julie Moreton from Trowbridge’s Train to Skaville and Jules & The Odd Men, will come together once again, at the Melksham Assembly on 16th October, for a show not to be missed.

This, for me, is all too much to take in, girls, girls, girls, I’m not sure I can control myself. The Female of the Species raised just over £3,000 in 2018 for the fantastic youth community project, Young Melksham, and for all their efforts, they were selected for a Community Civic Award.

This time all of your pennies from the tenner tickets will go to Carmela’s Fight Against Muscular Dystrophy, and those tickets are here.

Support will come from Melksham rock, blues and alternative covers and original band Plan of Action. Seriously folks, put this is your diary.

Carmela Wins WellChild Award

First thing I’ve got to do this week is to congratulate Carmela Chillery-Watson, our seven-year-old local heroine, for being chosen by WellChild, the national charity for sick children as their inspirational child in her age category. The celebration finale came last week, with a ceremony in which Harry Duke of Sussex presented her the award, amidst a star-studded audience.

I couldn’t agree more with WellChild’s excellent choice, being personally inspired by Carmela. It’s been a little less than two years ago when Carmela’s mum Lucy sent a fundraising poster for me to share on Devizine, and after talking to her about her daughter’s rare form of muscular dystrophy I thought, you know what, I could do more than this to help. And yes, it ended in a warm August morning, delivering milk, as is my “real” job, dressed in my Spiderman onesie!

Lucy had suggested Carmela prefers Wonder Woman as a superhero, but the practicalities, not forgoing the visual impact of me in blue star-studded hot pants might be pushing it too far! So, Carmela joined me for a short stint, to deliver the bottles, dressed as Wonder Woman, and we raised approximately £1,500 for some specialist equipment to make her life somewhat easier.

The apt association with Wonder Woman stuck for Carmela, who’s various fundraising efforts caught the attention of Wonder Woman actress Gal Gadot last year, and she kindly donated over £3,000. Inspired by the superhero, Carmela took on 300km in 30 days dressed as her hero, but it really did take it out of her with. There were days spent in pain and suffering with vertigo sickness, due to her spine curvatures and strain on her weak muscles.

A similar gauntlet is laid this year, the aim being a united 1,500 miles, the total it takes from Wiltshire to where they filmed Wonder Woman in Southern Italy. Commencing on the 1st September, the family hope to do it with the help of teams, raising money towards the medical research, in hope of giving effected children hope of a future or even just a treatment to slow the progression down. More information here.

And progress on a cure, or at least slowing the process down has recently had a breakthrough. INews Science & Environment Correspondent, Tom Bawden reported; “a cure for muscular dystrophy is on the horizon after gene editing experiments in mice completely eradicated the disease. Although far more research is needed to test the technique in humans the researchers are hopeful the process could one day be used in the NHS,” just last week.

Therefore, it’s been long overdue to catch up with the Chillery-Watson family, to congratulate them for the award, find out if the breakthrough treatment applies to Carmela’s rare strain of the disease, but mostly, to get the gossip on the celebrities she’s been meeting, making her something of a celeb now herself!

Click here to buy the book!

“I don’t think I ever met a celebrity until Carmela came along,” Lucy replied to my verbal probing about the renowned faces I see her pictured with. I suggested pictures posted on Carmela’s Facebook Page with Harry, she seemed to have her husband Darren pushed aside while displaying a flirty-face in his presence! “I’ve always got a flirty-face on!” she laughed, “we’ve met Harry once before, and he really is a great guy to chat to. He’s been patron of this sick child’s charity since 2007. He’s very passionate about it, I think because he gets it from his mum. Carmela was telling him her rude jokes!” she giggled.

I pointed out that Carmela has got so used to being in the spotlight. “She’s so blasé about it!” Lucy said, “it’s my fault because we wanted to get awareness out there, and it’s helped her confidence. She has gone through stages of low self-esteem, particularly now as she comes to terms with what her limitations are. So doing things like this makes her feel a little bit important. It boosts her self-esteem.”

Amanda Holden was one of Carmela’s chosen celebs to have turned up. “What a great chick she is,” Lucy responded, “so, so, one of us; she doesn’t mince her words, and made us feel at ease.” One I do know, Rolling Stone’s Ronnie Wood was there, she told me, but another was one my age made me ask my daughter for her identity, revealed to be pop star Anne-Marie, who sang live at the ceremony. Lucy praised her voice, but moved onto Ed Sheeran, claiming he was shy.

“Throughout lockdown,” we moved onto, “she did loads because she had to. With muscular dystrophy you can’t sit down all the time, because you get joint contractions, you get tight muscles and it’s irreversible, you have to keep that balance, and that’s very difficult.”

The gene therapy advances I wanted to mention. “The one we’re hopeful with is LCMD Research Foundation.” A family in the USA with the same condition to Carmela, but more severe. “They found some researchers in Spain willing to take on the gene therapy project specific for Carmela’s type, if they raise two million,” Lucy explained, stating they’ve already raised half in just six months. Lucy was unsure what strain the INews Science & Environment Correspondent reported on was specifically for, “but is also promising news.”

Somewhere in the conversation I doubted she would even remember me, the mere mortal milkman, now she’s rubbing shoulders with all these icons and celebs. But in the perfect finale to our chinwag, Carmela broke her bedtime procedure to disrupt the sombre and mature themes we were discussing, and bounded in to say hello. I confess, this part melted my heart, it’s been so long through lockdown since I’ve seen her, and was delighted to note, she knew me and remembered our shared work-shift almost two years ago.

Cheekily, I asked Carmela if she had a favourite celeb she met, and she confirmed they were Anne-Marie and Amanda Holden; mine too! Amanda in particular, I pointed out, being I had to inquire to who Anne-Marie was, truth be told. Intent on keeping me on my pegging, Carmela asked me, “have you heard Anne-Marie’s voice….” of which I was intending to reply a yes; now I have, when she added, “but, in real life?!” To which I can only confess she had this one over on me!  

“Well,” Carmela added, “you could always come to the WellChild as our guest.” Lucy laughed; she’s invited a number of guests already. Well, every celeb needs their entourage.

But I did finish on my surprise she recalled me, being she’d met all these “important people, when all I’ve been doing is putting milk bottles down.” Carmela replied, while dancing, “it’s very important for you to put the milk bottles down.” And it’s responses like that which makes her such a special person, and her zest for life is truly inspiring for all ages; the very motive, I might plug, for me to channel efforts into this compilation album for Julia’s House, who I might add, provide support to Carmela with regular home visits.

You can listen to, and buy the album here, thanks.

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Carmela Wins Points of Light Prime Minister Award

A huge congratulations to Carmela and the Chillery-Watson family of Lavington, who knew nothing about the Points of Light awards until Carmela was rewarded with one this week. “We are absolutely bowled over with pure happiness at this surprise award,” mum Lucy said.

First established in the USA by President George Bush in 1990, UK Points of Light was developed in partnership with the US programme and launched at Downing Street in 2014. Since then, hundreds have been named Points of Light by the Prime Minister, highlighting an enormous array of innovative and inspirational volunteering across the length and breadth of Britain.

Points of Light are outstanding individual volunteers; people making a change in their community, and after her 300km challenge last year, we couldn’t think of anyone more suitable and deserving than our lovable Carmela.

Diagnosed at the age of three with L-CMD, a progressive muscle-wasting disease which weakens every muscle over time, Carmela is now six and has come a colossal way in raising awareness and funds for Muscular Dystrophy, and continues to be an inspiration to us all.

“Thank you, Boris,” Carmela said, “this is awesome news, I can’t believe it, it’s so amazing. Thank you so much.” Although the prime minister is just another celebrity notched on Carmela’s campaign trail, meeting with the likes of Beverly Knight, Frank Bruno, Jimmy Carr, and even Harry Duke of Sussex. Oh, and not forgetting last September when Wonder Woman actress, Gal Gadot, donated over £3K to Carmela’s fund. Face it, between Boris and Gal, I know which one I’d rather meet!

It’s a wonder, excuse the pun, if Carmela remembers the morning when she helped me on my milk round at all. I hope so, as it was a pleasure to meet her, Lucy and dad, Darren, and an occasion, I’ll always hold dear; even if I was a little tired and smelly!

CEO of Muscular Dystrophy UK Catherine Woodhead congratulated Carmela, and added, “everyone at MDUK is thrilled that Carmela’s outstanding fundraising efforts for the charity have been recognised by the Prime Minister. To date, Carmela and her family have raised nearly £50,000 for MDUK.” Which is simply, amazing. Well done Carmela.

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Carmela’s Superhero Salvation Army Toy Appeal

Massive shout out to People Like Us member, Pip Phillips for getting his head shaved on Sunday in aid of Carmela’s Stand Up to Muscular Dystrophy. I told him he needs to join a ska band with his new skinhead look!

For those who don’t know Carmela, she has a very rare progressive muscle wasting disease which weakens all skeletal muscles, weakens the respiratory system and cardiac issues occur, and receives care from Julia’s House Children’s Hospice twice a week. You may recall the day I did my milk round in my Spiderman onesie August last year, when I was delighted Carmela came to help dressed as Wonder Woman.

Her love for Wonder Woman has become somewhat of a running theme in the fundraising effort, Wonder Woman actress Gal Gadot recently donated over three thousand pounds when Carmela walked her own mini marathon in place of her father Darren, who was intending to run the London Marathon.

Superhero is apt though, to describe Carmela, she is a little fighter, determined with her physical exercise to stay as mobile and strong for as long as possible. More to the point though, I can vouch for her charm, you’ll never meet a more inspirational girl than six-year-old Carmela and everyone immediately warms to her natural magnetism.

The tables have turned for this venture though, as her determination is to put smiles on other’s faces this Christmas. November is a time when Carmela usually raises money for her cure campaign with Muscular Dystrophy UK. But she asked to help children have presents for Christmas, as she saw a TV programme about vulnerable families and wants to help.

So, Carmela will be taking part in a virtual 4-week physical challenge with http://www.superheroseries.co.uk called Winter Wonder Wheels, Race Around The World, and instead of asking for sponsorship she is asking for at least £5 unwrapped gifts for any aged child sent to her home address so they can take them to The Salvation Army, as one trip at the end of her event. Please privately message Carmela on her page for address. Precisely why we love Carmela! If you want to get involved, here is the Facebook event page.

Win a £1000 and help Carmela

Who watched our Carmela and family on the telebox on Wednesday? Surely the most heart-breaking section of a documentary about life in lockdown and those taking the highest risks or making the worst sacrifices.

As her Dad, Darren said while driving his van around, delivery samples to hospitals, and unable to hug his daughter, the funding for muscular dystrophy research has dried up. But here’s a way you can help from home, and even win yourself a grand. The blind card advert can be found on Carmela’s Facebook page. You can help fill this lottery up. Pick a number from 1-150, pay £10 per number, so can have more than one if you so wish. Pay via PayPal.me/carmelasfund

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Once all the numbers are taken the winning number will be revealed and the winner receives £1000, Carmela gets £500 towards a safe garden access area to play. Yep, it is play, Carmela’s family say, but only in a form of. It is, in fact, crucial exercise for her at a time when swimming, and other activities have been restricted. It helps build her muscles, and rather than most of us, being for a healthier life and perhaps some abs for the opposite sex to swoon at, muscle building is essential for someone with a muscle-wasting disease. The lockdown is already taking its tow on Carmela’s health and wellbeing.

So, please, if you can, support this sweepstake and be in with a chance of winning. Thank you. x

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Two Fundraising Heroes, Slightly Younger Than Captain Tom!

As the nation embraces the 100th birthday of Captain Thomas Moore, who famously raised over £30 million of NHS Charities Together, I too tip my hat to this war hero, but I also wanted to highlight and thank two very much younger local heroes this week.

Firstly, a huge congratulations goes to 13-year-old Will Foulstone. Yes, the pianist prodigy from Bishops Cannings/Chirton who kindly played the first slot at our Waiblingen Way Fire Fundraiser at the Cellar Bar, and set that bar high for our following acts, Daydream Runaways, Chloe Jordan, The Celtic Roots Collective and Ben Borrill. Oh yeah, and who played with the Script and London’s O2 arena too, mind!

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Will

Father, Stuart, live streamed this grand effort last Monday, which, as part of a Facebook virtual festival, the International online music festival for PPE fundraiser, managed to raise over £1,500 for this worthy cause. Well done Will, a brilliant job!

Our second local hero slightly younger than Captain Tom is our wonderful, six-year-old heroine Carmela Chillery-Watson, who, since her dad Darren couldn’t run the London marathon this year, replaced the 26.2 miles of a marathon with 26 laps of her therapy assault course. This gruelling challenge was also streamed live on 26th April, where Carmela was in high spirits and played to camera while completing this mini marathon. Carmela raised a staggering £1953.00 for Muscular Dystrophy UK. You can still donate to Carmela here for her amazing achievement if you missed it.

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Carmela

“Carmela is sore and tired as expected,” Carmela’s mum said, “and will probably be wiped out tomorrow too, but she certainly did us proud and more today.”

Well done to both our heroes this week, if you know of anyone else we should add please let us know!

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Wiltshire Girl Goes LIVE for Muscular Dystrophy

It was a sunny afternoon when we arranged a photoshoot for our Spider-milk-man fundraiser last spring, so the playpark outside my house was an ideal location. Carmela played on the climbing frame while I got to know her mum, Lucy. It was sadly evident then how restricted her muscular dystrophy limited her ability to do what so many other children love to do, run and jump and play.

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The lovable part to this six-year-old is her optimism and endearing personality, but the inspirational is her zest for life and determination to overcome. For Carmela’s family life is a constant fundraising campaign and together they strive to find new ways to promote it. If Muscular Dystrophy UK, like many other charities is feeling the effects of Covid-19, for the family personally it hasn’t been easy either. In a heart-melting film for Points West last month, we saw Carmela’s Dad Darren unable to see his daughter as he’s a key worker and communicating with sign-language with her through the garden’s patio doors.

Alongside the many fundraisers for ‘Carmela’s Stand Up To Muscular Dystrophy,’ and for MDUK in general, Darren was due to run the London Marathon on the 26th April for MDUK, but this event has now been rescheduled for October. MDUK needs our help now though, for those with a progressive muscle wasting disease, at high-risk from the pandemic and the usual systems for coping vastly restricted.

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Save the UK’s Charities General fundraising has been hit very hard by COVID-19. Thousands of fundraising events have been cancelled and many charities, particularly smaller ones, are struggling to maintain services because of this huge reduction of income. This impacts all sectors of society from children to the elderly as well as the vital work in areas such as palliative care, serious diseases, mental health, housing support, food supplies and countless others that charities support.

Step in our six-year-old heroine, to replace the 26.2 miles of a Marathon, Carmela is going to attempt to do 26 laps of her therapy assault course LIVE via her Facebook page on 26th April at 2pm. Carmela would normally only do two to three laps. “This is going to be a very tough challenge,” Carmela’s mum Lucy explains, “we may have to take out certain high equipment during the challenge as she is not meant to over exert her exercises as damaging her muscles is permanent and won’t repair.”

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We wish her all the best and support for this enduring challenge, she will be going LIVE on her Facebook page ‘Carmela’s Stand Up To Muscular Dystrophy’ on 26th April at 2.06pm. You can also donate to MDUK. Text MDUK3 to 70660 and donate £5. Or directly to this link: https://www.justgiving.com/fundraising/my-2-6-challenge-d92bda3f-a95b-4a87-a64d-6dcb4b39491d

Go Carmela!

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Your Friendly Neighbourhood Milkman!

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…..

UPDATE!

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!

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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!”

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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.

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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!

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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!

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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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