THERE were cards and gifts galore as the community helped Molly May Rainbird celebrate the milestone of becoming a teenager.
For Molly, who turned 13 on January 25, has a terminal illness and might not get the chance to mark her next birthday.
So mum Adele Ingham, from Stalybridge, was determined to make this year’s date one to remember as well as raising awareness about Batten disease, an extremely rare genetic disorder.
She invited family, friends and locals to send cards to Molly, who is a massive fan of Manchester United and Disney, for her special day and was overwhelmed by the response.
“This is a super special birthday as Molly is not only going to be a teenager but due to her diagnosis this is a huge bonus for us to celebrate her birthday as next year is not promised,” said Adele.
“Due to Covid, Molly’s last two birthdays have been very restricted and I wanted this birthday to be super special.
“She has had a terrible year in the respect of disease progress and lots of hospital admissions due to lots of different issues.”
Molly, who was a pupil at St Paul’s Primary and loved singing and dancing, first showed symptoms of Batten disease in 2018 when she started to have cognitive problems around the age of eight.
After numerous tests and scans, she was finally diagnosed with the rare condition in 2019 and eventually moved to Oakdale Special School.
Since then she has lost her sight and speech, is wheelchair bound and tube-fed, suffers seizures and has dementia.
There are 13 different strains of Batten disease but sadly for Molly’s condition – CLN1 – there is currently no cure.
So Adele, who is Molly’s full-time carer, hopes to raise more awareness about the condition and help other children and families in a similar position.
“For others, there are treatments but some families have had to fight parliament to receive it as it is so expensive,” explained Adele.
“There are trials starting in Canada for Molly’s strain, which would stop disease and could bring some of her cognition back. But there’s no cure.
“So we really want to raise awareness and funds for research into treatment and cures.”
She praised charity Reuben’s Retreat for their help and support to make ‘such a big difference’ for both her and Molly, and also Francis House Children’s Hospice.
Helen Ingham, Molly’s grandma, added: “We never thought Molly would get to this age. Becoming a teenager is such a great achievement.
“We could have all the money in the world but it won’t buy a cure as there currently isn’t one. “But everyone deserves a chance at life so we want to raise awareness to help others and facilitate more research into the disease.”
• Find out more on The Batten Disease Family Association (BDFA) website:
• Read more about Molly on her Facebook page: Mollys fight against Battens Disease