Mum plans tragic toddler’s legacy
ABEREAVED mum whose toddler died from a genetic illness is channelling her grief into helping the parents of other disabled children.
Josh Kelly was just 15-months-old when he died last month from a mitochondrial disease.
But Josh’s mum Carole is determined to create a legacy for her son by setting up a charity to run play sessions for toddlers in her home town of Rochdale.
Carole, 33, of Wardle, first began planning the Jolly Josh playgroup while Josh was still alive after discovering there were no groups in the area for disabled youngsters under four.
And now the primary school teacher, who also has a daughter, Sophie, three, with her architect husband James, 31, is determined to push ahead with the plans
She said: “You have two options: you either don’t get out of bed on a morning or you find a focus.
“My focus is now Sophie and Jolly Josh.
“My original plan was that Josh would be here to benefit from the group, but now it will be his legacy and I am determined that other parents and children will benefit from it.”
The first signs that Josh was ill came when he was just four months old.
After a bout of bronchiolitis he became very poorly, lost the strength to hold his own head up and in Carole’s words ‘regressed to a newborn.’
He was eventually referred to specialists and underwent a series of scans and tests which revealed he had suffered extensive brain damage.
Remarkably Josh fought back and regained a lot of the abilities he had lost, such as sitting up.
But eventually the illness took over and his body began shutting down.
He became malnourished because he was unable to keep food down, often being violently sick several times a day, and had to be fed through a tube.
Tragically in May Carole and James were told Josh’s illness was terminal - it was the same type of disease which claimed the life of Charlie Gard, the baby whose fate was the subject of a protracted court battle and made headlines around the world earlier this year.
The couple immediately set about ‘making as many memories as we could’ and within a fortnight they were married at the Peacock Room in Bamford with Josh by their side.
Carole said: “We wanted to make as many memories as we could.
“I finished work and concentrated on spending as much time as possible with Josh.
“We tried to carry on as normal and take Josh everywhere we could. Looking back at the photos of our wedding now it’s extra special knowing Josh was there.”
In August the whole family went to Wembley to watch James’ beloved Wigan Warriors take on Hull FC in the Rugby League Challenge Cup final.
It was to be their last day out together.
On their return home Josh’s condition deteriorated rapidly and he was taken into Derian House children’s hospice where he died, on August 27.
Carole said: “Josh was amazing. He was just so happy and always smiling.
“The really tragic thing was that towards the end the illness took his muscle strength and he couldn’t smile, he couldn’t cry. He communicated through his eyes. He just fought so much, he never gave up. Right up to the very last day he never stop fighting, he never stopped trying.”
Now Carole is determined other parents will benefit from the play sessions.
Carole said: “I hope Jolly Josh will make a massive difference.
“Just meeting other parents who know what you’re going through is a massive help, just to get that support and know you are not on your own is massive.
“It is hard enough getting out of the house with a child, but with a disabled child it is even harder. I have an amazing family and an amazing support network around me and some days I found it bewildering. There are lots of people don’t have that support.”
Carole and James also said they would like to send their ‘heartfelt and sincere gratitude to everyone who has supported us during the past year’ including Dr Vassallo and the team at Ward 78, Manchester Children’s hospital, Dr Broomfield and the genetics team, health visitor Alex Laidler, consultant paediatrician Dr Levy, complex care specialist Anna Oddy, the community nurses and Josh’s key play worker Jackie, Derian House Children’s Hospice and Mrs Fierro at Springside Special School.
Jolly Josh is awaiting charitable status, but the first session takes place on Wednesday, September 27, from 1.15pm to 3.30pm at Springside School, on Albert Royds Street in Rochdale.
A weekly programme of sessions which will be attended by health specialists has been planned until Christmas.
For more information search for ‘Jolly Josh’ on Facebook.
●●Carole Kelly with Josh, husband James and daughter Sophie
●●Josh Kelly was just 15 months old when he died in August from a mitochondrial disease