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A calendar filled with lockdown artwork has been launched to help raise funds for a little boy living with an incurable muscle wasting illness.
Five-year-old Digby Donnelly from Deal was diagnosed with Duchenne Muscular Dystrophy (DMD) in 2017, aged two.
The rare condition which affects just 1,500 boys in the UK results in pre-teenager paralysis and death by early 20s.
To help raise awareness of the condition and to tie in with World Duchenne Day on September 7, his parents have launched a new fundraising scheme with the help of artist Bryony Sadler.
It’s a 2021 family organiser wall calendar, packed with watercolour designs – all of which were created during the lockdown period of the coronavirus pandemic.
They are now available at a number of outlets in Deal for £10.
Since launching yesterday, his mum Lisa Donnelly has already had to place a fresh order due to demand.
She said: “With Christmas around the corner these are perfect present idea so please stock up early whilst stocks last.
“The timeline for Digby’s decline is not set in stone but it will happen, that we cannot prevent and for that reason we are preparing.
“We are indebted to all support that will help us achieve this.”
News of Digby’s diagnosis in August 2017 was “totally and utterly devastating” for his parents Lisa and Steve Donnelly, of Middle Deal Road.
But they swung into action launching Digby’s Smile, a campaign to raise funds for his medical journey including life enhancing equipment and memorable experiences.
Since the family last featured on KentOnline , life has changed for them.
Digby’s 96-week clinical trial at Great Ormond Street Hospital (GOSH) in London has been extended by a further 288 weeks.
Mrs Donnelly said: “This means that Digby is committed to a weekly treatment in London, via infusion, for a total of 7.5 years – a massive commitment undertaken in the hope of helping his future and that of boys like him with DMD.”
Covid-19 put a hold on the little boy travelling to GOSH but not on the trial itself.
Instead medical professionals travelled to him. As a result, the home treatment which includes an infusion and tests will now continue, with Digby now only required to travel to London once every 12 weeks.
Mrs Donnelly said: “Over the last year Digby has progressed from a special pram for larger children with special needs to a first stage wheelchair.
“He has adapted to this very well. He is still mobile and loves to walk around as much as possible but his muscle fatigue is increasing and he can tire quickly and without warning he needs his chair.
“This is just the slow start of the decline but he copes very well and still manages to do what he does best, smiling and making others smile, the Greatest Showman!”
This week, the youngster reached an important milestone, starting primary school at Sandown.
Mrs Donnelly said: “He has so far done a few hours on a few mornings and loves it!”
The calendar is also supporting a second UK charity, The Sandcastle Trust, which provides fun, respite and memories for families who are affected by rare de-generative illnesses such as DMD.
The calendars can be purchased for £10 from Bonne Bombe in Queen Street, Beautiful Homes opposite Deal Market, Feel Good Fashion in Stanhope Road, U Beauty in Queen Street, Sholden Village Store and Maxted Pet Aquatic & Garden Shop.
They are also available to order via Facebook, email lisa.donnelly@digbyssmile.com or text 07968 439638.
Postal sales are available for an additional £3.10 for Royal Mail Second Class. Calendars can be collected or delivered.
Read more: All the latest news from Deal
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