A CAMPAIGNER determined on raising awareness of his granddaughter’s rare brain condition is taking their fight to Government.
Barrow parents Rob Morgan and Sarah Forster were delivered the news at their 19-week scan that their unborn baby had Dandy-Walker Syndrome – a rare congenital brain malformation involving the cerebellum and the fluid-filled spaces around it.
Little is known about the condition, which affects just one in 10k children, and medics advised Rob and Sarah to opt for a termination.
Adamant on giving their baby girl a chance at life, the parents followed through with the pregnancy and welcomed baby Mia 14 months ago.
After Mia’s diagnosis, Sarah and Rob struggled to find any support or information about their baby’s rare condition – and remain unclear about what Mia’s needs will be in the future.
Miss Forster said: “There's no support medically for those who have this condition.
"When I was told Mia had this condition, I remember thinking, what do I do now, how will I manage, and it has been difficult in that sense because I had no one to turn to.
"I want to spread awareness of that so parents like myself don't feel lonely in that situation
"And I also want them to know that termination isn't always the answer and some people might feel like what the doctor say goes which isn't the case.
"There definitely needs to be more awareness.”
Determined on raising awareness of Mia’s condition, Sarah's dad, Steven Forster Driver, has created the first UK Dandy Walker charity - and is meeting with Parliamentary Under Secretary of State for Department of Health and Social Care, Maria Caulfield, this month about the campaign.
He said: “Since Mia has had the diagnosis, we as a family have been looking for what information and support was available and found nothing at all available in the UK.
“We have been in touch with many families who have a Dandy Walker sufferer.
“There is limited medical knowledge and no charity, so we decided to start one.
“We are also forming a support network across the UK for people to share information and specific equipment that sometimes is needed.
“Dandy Walker Syndrome is not just a singular condition. There are many other conditions associated with it: blindness, renal failure, cerebral palsy, spina bifida, heart problems etc.
“We aim to provide support for all. DWS isn’t recognised in the UK as a disability. The charity may start small but we are meeting with the health minister’s department in February and the General Medical Council.
“We are also lobbying to have our health services contact the American health authority as they are the leading provider of care and services.”
Mr Forster Driver and his partner Louise are also hosting a Dandy Walker Syndrome Family Support UK launch party on Friday January 28 at Barrow Soccer Bar in Walney to raise funds for information packs about the condition.
He said: “The launch party is to get funding to provide information packs to newly diagnosed babies.
“At present 97 per cent of mothers are told and advised to terminate without being given all the information regarding Dandy Walker.”
The pair will be performing on the night alongside Rod Stuart tribute act, Mike Macaulay.
More than £2,000 in raffle prizes have also been donated to the charity event.
Tickets are available by contacting Mike on 07865051772.
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