THE daughter of an Irishman living in Britain, who sadly lost his brave battle with Motor Neurone Disease, has released an emotional video to raise awareness of the disease.
London-based Lorraine Sheahan, 39, faced challenges in getting her father the diagnosis and help he needed and has now shared her experience of caring for him to help the Motor Neurone Disease (MND) Association charity.
Her father Michael Sheahan, a building manager originally from Knockdown, near Glen in Co. Limerick, died aged 69 in November 2014 – just three months and 20 days after he was diagnosed.
“I miss him every day,” Lorraine said of her father, who she described as a proud family man and a big GAA fan, particularly of his team Robert Emmetts.
“It is nearly two years on from losing my dad now and it feels like it was yesterday and time does not make things easier,” she added.
The short film follows Lorraine’s journey as she tries to raise the issue of care for people with MND with Southwark Council, who eventually adopt the MND Charter – a document that sets out basic rights and care expectations for people living with MND and their carers.
It also shows touching moments from the Sheahan family album over the years.
Watch the video below…
“As a family member I found it challenging making sure we had the right care available for my dad,” she said. “It was really frustrating spending time on the telephone with services when I could have been spending precious time with dad.
“MND can progress very rapidly and we lost him just three months and 20 days after diagnosis. I hope through this film other people around the country will do the same and get their councils to adopt the MND Charter; it can really make a difference.”
Following her father’s death, Lorraine chose to volunteer to help other families affected by MND and she now hopes other councils will follow in Southwark’s lead and adopt the MND Charter.
“Councils play a key role in providing care and support for people with MND at a local level,” she said. “I know dad would have been very proud.”
Cllr Richard Livingstone, cabinet member for adult care and social inclusion at Southwark Council, added: “I am very proud that Southwark Council has adopted the MND Charter and is working to support those with this devastating disease in our borough.
“Lorraine’s journey to get the council on board is truly inspirational and we would strongly encourage other councils to sign up to the Charter to ensure that families coping with MND have all the support they deserve.”
The MND association is a national charity represents people affected by the disease across England, Wales and Northern Ireland.
Raj Johal, National Campaigns Manager, said: “Working with Lorraine on this film was a real privilege, she is an amazing lady.
“With no previous campaigning experience, she took on the campaign to get Southwark Council to adopt the Charter, proving the most important thing you need to campaign is a passion to help make a difference.”
To date, a total of 23 councils have adopted the MND Charter.