Daniel Green, whose brain is damaged in three areas, was diagnosed at four months old leaving him struggling to stand, sit and eat.
Zoe Darcy, Daniel’s grandmother, had been campaigning for a number of months to try and raise £23,000 that would help install a specialist pool for the youngster.
They hit their target in November last year - a feat made even more spectacular due to lockdown - and have since been raising money for research around mitochondrial disease as there is no cure.
Daniel was moved onto palliative care in April this year with the Bluebell Wood Children’s Hospice, who care for children and young adults whose lives are sadly too short.
It came just months after Daniel caught Covid, and miraculously recovered, and Zoe admits this year has been difficult for the family.
She told the Chronicle: “We managed to raise the target last year which was great but since then Daniel’s been really poorly.
“He had Covid at the beginning of the year and that was really worrying - we were so frightened.
“We had no idea at the time how he’d react to it and he did get poorly but he managed to get better - there were a lot of tears during that time.
“In April, he started to get very poorly as he was having bowel problems and struggling with nutrition.
“We had an in-depth chat with the nurses and they referred him to Bluebell Wood for palliative care.
“It’s all about keeping him comfortable and pain-free for now.”
Zoe says the support the local community has given the family over the past few years has been amazing - stating that they’ve made her ‘blank out’ Daniel’s condition at times.
“The Barnsley community have been absolutely amazing and I can’t thank people enough,” she added.
“Daniel’s been helping out with the Thornhill House home and it’s like the residents there have adopted him. They write cards to him and we send some takeaways back for them - it’s really nice and everyone has pulled together.
“People are adapting things for Daniel and he’s become a part of the community - I hope that it continues to go on like this.
“I really want Daniel’s legacy to be helping support change for people in similar circumstances.
“Everyone wants to know how he is and it’s so comforting because it doesn’t make us feel alone.”
It’s now all about making memories for Daniel and his family and Zoe says they’re trying to do as much as they can whilst they’ve ‘still got Daniel’.
“We’ve just purchased him a day van which has been a big help because there’s not many places that cater for his age group,” she added.
“We’re making memories with Daniel and lockdown was hard because he was quite isolated and he just loves people.
“With the van we’re now able to go to places like Cleethorpes and Cannon Hall Farm which is really good.
“As much is we all knew palliative care was going to be a part of Daniel’s journey, when he’s with you and he’s doing okay it’s hard to come to terms with.
“The reality has kicked in now and we’re making the best out of a bad situation but it’s really difficult - we’re in the scary part now.
“We’re just determined to make as many memories and do as much as we can whilst we’ve got Daniel.”