A BRAVE baby girl who inspired a fundraising dream has lost her battle with a rare genetic disorder.
Little Madison Murray, who had Spinal Muscular Atrophy (SMA), died in her parents’ arms at their home in Stockingate, South Kirkby, on Monday.
She was just 17 weeks and three days old.
Her parents, who found out when Madison was born that she had the debilitating disorder, have vowed to carry on with their fundraising campaign, Madison’s Dream, to open a sensory unit near their home in her memory.
Madison’s mum Laura Kendall, 29, said : “Our charity work will continue. Madison’s Dream needs to come alive now more than ever.
“We want to complete what we started.”
Madison’s medical condition affected the motor neurons in her body which meant proteins could not get to her muscles effectively. Those affected have limited ability to move their muscles, which weaken and waste.
There is no cure for the disorder, which can affect the lungs – which are a muscle - and stop them from working.
When Madison was born, the family, including dad Jason Murray and big sister Tori, were told she might have just six months to live.
Madison responded well to sensory equipment at Pontefract Hospital so the family decided they would try and raise £20,000 to open a unit in South Kirkby in honour of Madison called Madison’s Dream.
They have already raised more than a quarter of their target by holding charity events.
Miss Kendall, 29, said: “We can finally rest knowing she is at peace and it is some form of closure for us.
“We looked after her at home right until the end with the help of the Jigsaw team.”
The team provides all-round care to children and young people who have a life-limiting or life-threatening illness.
Miss Kendall gave a special thank you to Madison’s palliative care nurse, Katie Ward.
Madison’s funeral will take place next Thursday at All Saints Church, South Kirkby.
Mourners will be asked to wear bright colours.
Miss Kendall said: “I really want it to be a celebration of Maddy’s short life.
“We have had hundreds of messages of support and it has meant so much to us.
“I just want to thank the whole community for their support. She touched everyone she knew.”
A service after the funeral will be held at Pontefract Crematorium and then at South Kirkby Cricket Club.
The family asked that donations be made to the fund instead of flowers at the funeral.
l The Express will continue to follow the family as they make Madison’s Dream come true.
If you are holding a fundraising event, get in touch by calling 01977 642214 or e-mailing firstname.lastname@example.org.