A CAMPAIGNER is one step closer to forming a charity for his granddaughter’s rare brain condition after taking his 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 10,000 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.

Determined on raising awareness of Mia’s condition, Sarah's dad, Steven Forster Driver, is intent on creating the first UK Dandy Walker charity.

Mr Forster Driver met with the Parliamentary Under Secretary of State for Department of Health and Social Care, Maria Caulfield, alongside Barrow MP Simon Fell to highlight his campaign.

He described the minister as ‘absolutely amazing’ – and explained what the Government can do to help bring attention to Dandy Walker.

Mr Forster Driver said: “We would like to thank Simon Fell MP and his team for all the support shown to the Dandy Walker Syndrome Family Support UK.

“Mr Fell has been lobbying in Parliament to bring much needed attention to this rare condition.

“He arranged for my partner Louise and I to meet with Maria Caulfield in London to talk about our granddaughter Mia and the many other children, parents and families who are fighting every day with DWS and its many associated conditions.

“The minister was absolutely amazing, she really listened and explained what the Government can do to help us.

“Maria also introduced us to a member of the research and development team for rare diseases who went further to talk about how they could specifically help in the research on DWS.

“Maria explained about the Government programme being rolled out regarding rare diseases and how she would be asking the NHS and GMC to look at further training in dealing with DWS and other rare conditions as well as looking for a neurologist to take a lead specialist position in furthering the understanding and care of DWS patients.

“There were also discussions around more practical ways to help and how the Government could help create a register of those individuals with DWS.

“We talked about the help available to Dandy Walker Syndrome Family Support and Maria and Simon will continue to help us move forward in the future.

“As a result of the meeting, we are now signed up as part of the rare diseases UK group and also a step closer to becoming a charitable incorporated organisation and a national recognised charity.

“We are also members of Cumbria CVS and planning to hold our first support group meeting in the near future.”

Mr Forster Driver said the family has been overwhelmed with support after bringing their ‘Dandy warrior’ home from the hospital.

“Things are moving fast and the support we have from charity organisations and local people and businesses is amazing,” he said.

“Our little Dandy warrior is now home from Newcastle RVI after 11 weeks and is going from strength to strength.

“The journey ahead for any DWS child is never going to be straight forward but, with our strong family and determination, we will help others to have greater support and awareness.

“It’s nice when politics takes a back seat and humanity and acts of kindness take over.

“Thank you Simon and his team.”

Simon Fell, MP for Barrow and Furness, said: “Thank you to Health Minister Maria Caulfield for meeting with me and my constituents Steve and Louise to discuss awareness of Dandy Walker Syndrome in the NHS and how best to improve care and support for those living with rare diseases.”