Fundraising pledge in memory of baby with rare genetic disorder

CREATING A LASTING LEGACY: Madison Murray in the arms of her sister Tori Houghton, pictured with mum and dad Laura Kendall and Jason Murray.

CREATING A LASTING LEGACY: Madison Murray in the arms of her sister Tori Houghton, pictured with mum and dad Laura Kendall and Jason Murray.

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The parents of a baby girl born with a rare genetic disorder have vowed to continue a fundraising campaign after their daughter lost her fight for life.

Madison Murray, who suffered from spinal muscular atrophy, was just 17 weeks and three days old when she died in her parents’ arms at their home in South Kirkby near Pontefract on Monday.

Her parents Laura Kendall and Jason Murray are to continue their bid to raise £20,000 to create a lasting legacy to Madison to benefit other seriously ill children.

Madison’s incurable disorder affected the motor neurones in her body which means proteins could not get to her muscles effectively. Those affected by the illness have limited ability to move their muscles, which weaken and waste.

Madison had responded well to sensory equipment, including lights and sounds at Pontefract Hospital.

Her family want to create a new sensory unit called Madison’s Dream in the Burntwood Community Centre in South Kirkby.

Miss 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.”

They have already raised more than a quarter of their target by holding charity events. Miss Kendall added: “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 (March 29) at All Saints Church, South Kirkby.

Mourners will be asked to wear bright colours. Miss Kendall said: “I 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 has asked that donations be made to the fund instead of flowers at the funeral.

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