Charity bid to save children like Bella Morris from Chorley
Parents of a three-year-old from Chorley who suffers from a killer disease have set up a charity in the hope of saving her, and other children like her.
Generous members of the community donated £25,000 last year to the Saving Bella Morris fundraising campaign.
Now Bella’s parents, Peter Morris, 36, and Natalie Stevenson, 32, want to take that figure to £2.5m.
They want to fund pioneering research into discovering a cure for Vanishing White Matter – a terminal disease which gradually destroys the white matter in the brain which is causing Bella to slowly lose the ability to walk, talk, eat, see and hear.
Their hope is that by pouring money into research via their newly founded Rainbow Dream Charity a cure might be found in half the time than it would have been otherwise.
“Obviously we are forever hopeful,” said Peter. “We want to stop it in its tracks or reverse it.
“If it can’t help Bella it would be great to have it as a legacy for others who have the same condition.
“When your daughter’s diagnosed and you’re told she’s got X amount of years to live you do anything.”
Vanishing White Matter is a disease that can run in the family and in Bella’s case, both of her parents carried the recessive gene. The cruel condition, for which there is no cure, affects one in 40 million.
Peter, who is a community matron at Blackpool Teaching Hospitals NHS Foundation Trust, said: “Our daughter was fine till two and a half but now a year later she can’t walk, eventually she will be restricted to a chair and bed and then ultimately death, with life expectancy five-10 years after diagnosis.
“She can still support her upper body at the moment. The good thing is that she’s not at the age where she questions it, she accepts it and moves on. She does remember being able to walk but she’s adapted to it well.”
In November 2015 the toddler came down with what seemed like a cold, which worsened even after visits to the doctors.
Bella then became unsteady on her feet and was “walking like a drunk person”.
She was then taken to have more tests, and six months later she was diagnosed after an MRI scan showed “significant changes” to her white matter - the area of the brain which controls nerves.
“The doctors said it was life threatening and that Bella could only have a few months to live,” said Peter at the time.
“Being told that, our world just fell apart there and then.”
Peter hopes that the charity will shine a light on the condition as well as act as a channel to fund ongoing research.
There are only two professors looking into the disease that Peter is aware of. Dr Marjo S van der Knaap, who is based in Amsterdam, is looking into prevention of the condition. Meanwhile Dr Orna Elroy-Stein, based in Israel, is making progress towards a treatment to stop the disease from developing further.
However, Dr Elroy-Stein is not funded and the family are looking to help her reach a goal of £2.5 million to find the treatment.
Peter said: “Our aim is a race against time to increase awareness and understanding of the condition and to raise funds for the promising research in Tel Aviv to find a cure undertaken by professor Orna Elroy-Stein.
“We want to stop families having their children’s lives being taken from them and this can be done in our lifetime.”
As well as working to get as much publicity of the condition as possible Peter is planning on undertaking the Three Peaks Challenge in the spring. He is also keen for people to raise money for The Rainbow Dream Charity.
To find out more about The Rainbow Dream Charity and to donate or fundraise for more research into VWM go to therainbowdreamcharity.com