Caoilte Fitzsimons is just 16 months old and has already spent almost half her life in hospital due to a condition which causes severe and progressive muscle weakness.

Caoilte is life-limited and has Spinal Muscular Atrophy Type 1. Her parents Robert Fitzsimons and Fiona Murphy were unable to get any help from their local statutory services in North Belfast for basic equipment that really would make such a difference to their lives.

In desperation the family turned to Newlife Foundation for Disabled Children for help. They received a specialist bed and buggy through the charity’s Just Can’t Wait service which is offered to children who are terminally ill or life limited – aiming to deliver the equipment within just 72 hours of an application being received. Caoilte also received comfortable seating known as a PPod through an equipment grant which has further enhanced the quality of her life.

Now Caoilte’s family are backing grandmother Lorraine McMahon who is spearheading an awareness and fundraising campaign for Newlife – so more families across Northern Ireland can get the vital equipment support they need.

Because of her condition Caoilte’s muscles are thin and weak, which makes her limbs limp and floppy. Babies with the condition are usually unable to raise their head or sit without support and breathing problems can be caused by weakness in their chest muscles and difficulty swallowing can be made worse by weakness of the muscles in the tongue and throat.

“We couldn’t get a grant for anything through the hospital but our Occupational Therapist suggested we contact Newlife. The equipment they have provided has made a really big difference,” said Robert.

“Before we got the bed and the buggy Caoilte was stuck in the hospital for seven months. We have to transport a lot of medical equipment with her wherever we go and you just can’t fit that on a normal pram.

“The PPod also means she can be out of her bed and be more comfortable. She can do things – like make paintings with her handprints on a tray, hit buttons on an iPad for games and watch cartoons on TV. When she’s in the chair she can look straight at us too.”

The plight of families like Caoilte’s is highlighted by an awareness and fundraising campaign – Lorcan’s Legacy – launched by Newry grandmother Lorraine McMahon and Newlife. Lorcan McMahon was born with hydrocephalus – a build-up of fluid on the brain – and brain cysts, which caused him to have frequent seizures. Without any appropriate equipment provision from statutory services, Lorraine and her family were forced to nurse Lorcan on the family sofa. Lorraine turned to Newlife which delivered a specialist bed to the family home in Newry three days later. This meant fewer readmissions to hospital for Lorcan – and the family could make the most of his last few precious months. Lorcan passed away, aged 22 months, earlier this year.

Robert said: “Lorcan’s Legacy is a good idea and will help raise funds for equipment that’s needed.”

Newlife is currently working with five families in County Antrim to fund equipment grants totalling £12,568. The charity needs £100,000 a year so it can continue to help families in the six counties in Northern Ireland – and Lorraine and Robert are urging people to fundraise or donate. For further information, go to: newlifecharity.co.uk/lorcan or call the Newlife Community Fundraising Team on 0800 988 4640 (freephone from UK landlines).

Newlife CEO Sheila Brown, OBE, said: “Newlife guarantees that 100 per cent of any gift or donation will go directly to provide equipment for disabled and terminally ill children – and donors in Northern Ireland can ring-fence their money to be spent their area.”

*Caolite’s dad, Robert, has been featured on Downtown Radio in Northern Ireland talking about his daughter and their struggle to access equipment locally.

Pictured: Caolite Fitzsimons

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