A MOTHER from Stalybridge will be able to take her 11-year-old sick daughter back to Disneyland after a mystery donor gave her £500.
Adele Rainford was overwhelmed by the generosity and had put down a deposit on a return trip to Paris for Molly, who suffers from Batten disease, a rare form of childhood dementia.
The man, who declined to give his name, rang The Correspondent from a public telephone box after reading about the plight of Molly in a national newspaper. He was moved to such a degree that he wanted to help and left £500 in £20 notes in an envelope at Stalybridge Music Academy.The man said he had been lucky betting on football and wanted to share his winnings.
Adele, who lives on Brushes Estate where she is Molly’s full-time carer, said: “I cannot believe this man’s generosity, what a selfless person he is.
“I am overwhelmed and would love to thank him through The Correspondent seeing I cannot do so personally for this fabulous gesture.”
Adele explained Molly loved her trip to Disneyland Paris in January saying she was still able to see the colours and loved the fireworks.
“It’s very difficult to say how much tie we have left. I am making the most of the time we have and making memories.”
Batten disease is rare with Adele explaining there are only one or two children diagnosed each year with the illness.
Adele shared Molly’s story on Facebook at ‘Mollys fight against Batten disease’ and was subsequently approached by a media agency and agreed to be interviewed to help raise awareness of the disease for which there is no cure.And since it appeared in various national newspapers, Molly has also been featured on television news in America.
Adele said the feedback has been positive and she has been in touch with families of children with Batten disease in America, Australia and New Zealand.
Molly was a pupil at St Paul’s Primary, Stalybridge, and like any other child until the age of six when Adele mentioned that there were warning signs everything was not right.
She said: “Molly would have vacant episodes and the teachers would have to repeat things for her to do.
“Until then her reading and writing were above average and she was very switched-on.
“We also noticed something wrong with her eyes and she would fall and she later developed epilepsy and suffered up to 50 seizures a day.”
Adele initially feared Molly had autism or ADHD when she was referred to a paediatrician at Tameside Hospital
It was not until May 2019 that Molly was diagnosed with Batten disease, describing it as “devastating” when the diagnosis was delivered by a neurologist at Manchester Children’s Hospital.
It was caused by a faulty gene and there is a 1/200,000 chance it is carried by both parents.
As Molly’s health deteriorated – she is effectively wheelchair bound and has lost most of her sight and speech – she had to move 12 months ago from mainstream education to Oakdale Special School for her final year at junior school and is now at Cromwell High School.
Adele is hoping Molly will be accepted for the trial of a new treatment in America which has been developed by Taysha Gene Therapies that could improve her speech.
The cost of travelling to Dallas would be met by Taysha, but places are limited with Adele still waiting to hear if Molly has been accepted.