THE INSPIRATIONAL parents of a baby girl who was born with a rare genetic disorder and has only months to live hope to raise £20,000 to open a sensory unit in her honour.
Laura Kendall and Jason Murray, of South Kirkby, were told that little Madison has Spinal Muscular Atrophy (SMA) when she was born in November - and may only live to be six months old.
The disorder affects the motor neurons in her body which means proteins cannot 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 means her lungs – which are a muscle - will eventually stop working.
Miss Kendall said: “She has suffered from day one. It’s a cruel disease. She was basically born dying. It is awful and there is no cure for it, so we are just making her as comfortable as possible.”
Three-month-old Madison has responded well to sensory equipment such as the bright lights and sounds at Pontefract Hospital.
Now her family hope to open their own unit – called Madison’s Dream - in the Burntwood Community Centre, on Church Top, South Kirkby.
Miss Kendall, 29, of Stockingate, said: “Even though Madison won’t be able to benefit from it, I want it to be out of this world for other people.
“Not everyone can afford to get to Pontefract and we know of a lot of children and adults in the area who would benefit from the unit.
“For a long time it was doom and gloom for us but we have got a positive focus now. And what a better legacy for Madison to leave than a unit that will help so many people.”
Nic Bungay, director of campaigns, care and support at the Muscular Dystrophy Campaign charity, said: “Babies with SMA are often bright and alert, and just as with any young child, want to explore the world around them. Sensory toys using music, lights, colours, shapes and textures give young children with the disorder, the entertainment and stimulation that they need.”
The family have applied for Lottery funding, and will hold fundraising events in the hope of reaching their cash target.
Adam Redfern, manager at Burntwood Community Centre, said: “The vision is great, and as a community we need to help support this project by raising funds to make Madison’s Dream a reality.”
Miss Kendall said it was devastating to find out she had the disorder.
She said: “The pregnancy was normal and tests for other diseases were done so I thought everything was fine. But when she was born she was all floppy so knew something was wrong.”
Tests when Madison was eight days old revealed the disorder.
Madison will be christened on Sunday, and the family are hoping to make the milestone extra special.
Miss Kendall said: “She will never have a birthday or another Christmas so it will be lifetimes worth for her. It will be a great memory for us all.
“I just want to make people aware of the disorder and get the centre up and running.”
SMA is the most common genetic cause of infant death.
The first fundraiser is a ladies’ night at the Recreation Club, South Elmsall, on March 1, featuring music, burlesque dancers, and raffles.
For tickets, or to donate money or raffle prizes, contact Madison’s uncle, Dean Kendall, on 01977 261060.