Tragic Lorcan's gran in children's charity drive: 'I want people to know there is help out there'
Knowing her baby grandson was in his final months of life, Lorraine McMahon was desperate to do everything in her power to make him comfortable.
Now after the death of Lorcan at the age of just 22 months, his Newry grandmother has launched a campaign to help families facing similar distressing circumstances.
Lorraine decided to help disabled and terminally ill children after she nursed her grandson, born severely disabled.
The financial adviser is now raising funds for specialist equipment through the Lorcan's Legacy project, supported by the Newlife Foundation charity, following his death earlier this year.
Lorraine said she was prepared for hospital stays, long sleepless nights and days of clinic appointments after Lorcan's birth – but wasn't prepared for the "constant battle for help and support".
"When you have a child with special needs you are so busy providing round-the-clock care that you don't have the time – or the energy – to spend hours researching vital equipment support.
"You assume that people within the medical and social care services will do it for you. But in my experience, that just didn't happen," she said.
Lorcan was born with hydrocephalus – a build-up of fluid on the brain – and brain cysts, which caused frequent seizures.
He spent the first five months of his life in Belfast's Royal Victoria Hospital where he was surrounded by specialist equipment.
But when he was discharged home to Newry, Lorraine said she wasn't given equipment to help keep him safe and comfortable.
The grandmother said he was frequently re-admitted to hospital.
At home, he was kept in a standard baby cot and during the day was nursed on the family sofa.
"Even when he was well enough to be discharged from hospital I was told we would need an expensive specialist car seat just to be able to get him home. But we had to fund it ourselves," she added.
The family appealed to charities for help – and found support from Newlife.
"I almost didn't approach Newlife because the charity is based in England and I thought they wouldn't want to help a family in Northern Ireland," she said. "I couldn't have been more wrong. I was desperate to get a specialist bed for Lorcan but these cost thousands of pounds.
"I had been waiting months for a decision from statutory services yet just a couple of days after our lovely community nurse contacted Newlife on our behalf, it delivered the bed to my home and sent someone along to set it up. I was amazed."
For the final four months of his short life, Lorcan slept in the specialist profiling bed.
"Having the bed was so important to us because it meant fewer stays in hospital and we could make the most of his time with us," she said.
With support from Lorraine and Lorcan's mother Ave, the Newlife Foundation has launched an appeal – Lorcan's Legacy – to ensure it can continue to support families in Northern Ireland.
Lorraine said: "I don't want other families to struggle like we did. I want everyone to know all about Newlife.
"However, the charity needs £100,000 a year so it can continue to help families like ours in Northern Ireland. If it was your child or grandchild you would want them to have the right help at the right time."
To donate or fundraise visit newlifecharity.co.uk/lorcan or call Newlife Community Fundraising on freephone 080 0988 4640.
Newlife is the UK's leading children's disability charity specialising in support to aid children affected by all disabilities. Last year it provided £95,694 of disability equipment for children in Northern Ireland through its Equipment Grants service. In addition to this, families here accessed the charity's Just Can't Wait emergency equipment loan service for life-limited children.