The campaign, Walk with Carmela, is fronted by six-year-old Carmela Chillery-Watson, who has LMNA-CMD.
It will feature on the world-famous Piccadilly Lights in London, with the Devizes youngster being transformed into an 8-bit version of herself, below left, walking through a pixel art map of the capital.
Carmela, like many other people with muscle-wasting conditions, has been shielding at home for the past 10 weeks, and will continue to do so even as restrictions lift. Her 8-bit character symbolises her ambition to join those who are not shielding, and encourages people to “Walk to work, for those who can’t”.
Her mum, Lucy, says:
I couldn't be prouder of Carmela. Lockdown has been a real test of endurance emotionally and physically for an adult, let alone a six-year-old child with additional needs. Carmela has dealt with the situation like a trooper. Even though she has her sad days, she soon picks herself up and cracks on with the day.
She has thoroughly enjoyed helping MDUK, I think because she loves the limelight and the attention it brings, but it has also given her a distraction from lockdown.
What do we think?
As you may have already heard, we have suffered a huge loss in donations because of Covid-19 totalling more than £2.8 million, at a time when we are needed more than ever. Through our Walk to Carmela campaign, we aim to raise £1m to help limit this shortfall.
None of this would have been possible without the donation of ad space by LandSec and Ocean Outdoor as well as support from creative agency Atomic and digital artists Eboy, who designed the 8-bit Carmela. All have given their time for free, and we’re very grateful to them – and, of course, to Carmela and her family.
Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, said:
Lockdown restrictions are being eased and more people are returning to work and school. But like many of the people we support, Carmela will not be joining them. Life may be starting to return to normal for some, but not for children and adults with conditions like muscular dystrophy, who will continue to stay at home for some time.
The launch of our campaign comes as the government announces it has updated its guidance for people who are shielding, advising they can leave the house once a day.
We will be updating our own guidance around this, and are calling for more information as to why this decision has been made now. While some will welcome the new guidance, we are now faced with further confusion about why the advice has changed so suddenly when only a few weeks ago the Government’s recovery strategy said shielding would have to remain in place for a further period. You can read our full statement here.
How can you get involved?
If you would like to Walk with Carmela, text WALK to 70140 to donate £3.
You can also share the campaign via social media, or through your local media.
What support are we offering right now?
We are continuing to update our Covid-19 guidance, which you can read here.
Our helpline is open Monday-Friday, 10am-2pm. Alternatively you can email us at info@musculardystrophyuk.org. We will get back to you as soon as we can.
Find out more and donate to Carmela's latest fundraising 'Wonder Woman walk' challenge