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!

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“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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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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