An appeal launched by a grieving Newry family to help provide specialist equipment for disabled and terminally ill children in Northern Ireland has seen its first success.

Grandmother Lorraine McMahon has spearheaded a fundraising campaign for Newlife Foundation for Disabled Children in memory of her young grandson Lorcan, who passed away last January (2014) aged 22 months.

‘Lorcan’s Legacy’ aims to help raise the £100,000 needed each year so Newlife Foundation can continue to support families of disabled children in Northern Ireland.

Little Jessica Henderson, from Newtonards in County Down, is the first child to benefit from Lorcan’s Legacy. She has been provided with a specialist bed so she can sleep in safety.

Jessica, who is three years old, has Cerebral Palsy, Epilepsy and scoliosis and has failed to meet many of her developmental milestones. She also has a visual impairment and is tube fed.

When Jessica outgrew her baby cot, her parents started to look at alternatives. Local statutory services only offer hospital-style beds for adults, which the family were told they could not have due to unsuitability. And, because of her complex condition, a standard bed would not keep Jessica safe.

The age-appropriate specialist equipment costs £6,970 – so the family were advised by Jessica’s nursing team to contact leading UK children’s disability charity Newlife Foundation for help. Mum Donna Needham said: “We thought about fundraising ourselves, but knew it would take months to raise the huge amount of money needed – and Jessica desperately needed somewhere safe to sleep. Not only was she too big for the cot but we were concerned she would get her limbs caught between the rails and hurt herself. Cot bumpers weren’t enough and when we tried pillows in the bed we realised there was a danger of her suffocating.”

Donna added: “Newlife were brilliant. Just six weeks after sending in our application we were contacted by a Newlife nurse who told us we were getting the equipment, which is fully padded. I thought she was joking – I am not used to getting anything for Jessica!

“It is not only a specialist bed but a safe space for Jessica to play in if I need to do a few jobs around the house. I know that when she is in her bed she can’t hurt herself, which is a huge relief.”

Newlife CEO Sheila Brown, OBE, said: “We are aware of the budget restrictions which, in effect, tie the hands of many frontline health professionals in Northern Ireland. So we would encourage more community nurses, physiotherapists, occupational therapists and doctors to use Newlife’s resources to help support their young patients. We all want the same thing – the best level of care possible.”

With Lorraine McMahon’s help, Newlife Foundation launched ‘Lorcan’s Legacy’ to help ensure the charity can continue to support other families of disabled and terminally ill children in Northern Ireland.

Lorraine, a financial adviser for Barclays bank, said: “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, so please help Newlife help other special children.”

To donate or fundraise, go to: newlifecharity.co.uk/lorcan or call the Newlife Community Fundraising Team on 0800 988 4640 (free from UK landlines). All the money received will be used to provide specialist equipment for disabled and terminally ill children in Northern Ireland.

Last year (2013/14) Newlife provided £95,694 of disability equipment for children in Northern Ireland through its Equipment Grants service. In addition to this, NI families accessed the charity’s Just Can’t Wait emergency equipment loan service (for life-limited children like Lorcan), the Emergency Bed Loan service for children sleeping in unsafe environments and Play Therapy Pods which offer loans of sensory toys to families of youngsters with complex needs.

To contact the Newlife Nurse Helpline, call 0800 902 0095 (free from UK landlines) or email nurses@newlifecharity.co.uk. Further information about the full range of support services is available by going to: www.newlifecharity.co.uk

Pictured: Jessica Henderson.

Lorraine’s story:
When Lorraine McMahon’s grandson Lorcan was born with severe disabilities, she naturally wanted to support his long-term care needs.

She was prepared for frequent stays in hospital, long sleepless nights and days full of clinic appointments. What she wasn’t prepared for was the constant battle for help and support.

Lorraine says: “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.”

Lorcan was born with hydrocephalus – a build-up of fluid on the brain – and brain cysts, which caused him to have frequent seizures. He spent the first five months of his life in the Royal Victoria Hospital in Belfast where he was nursed surrounded by specialist equipment. But when he was finally discharged home to Newry, Lorraine wasn’t given any such equipment to help keep him safe and comfortable.

With only a standard baby cot, Lorcan was not able to be positioned properly and safely when he experienced regular chest infections – and during the day he was nursed on the family sofa – so he was frequently readmitted to hospital.

With no offers of appropriate equipment for use at home from medical or social care services, Lorraine was driven to applying to charities for help. She said: “I was desperate to get a specialist bed for Lorcan but these cost several 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, the charity delivered the bed to my home and even sent someone along to set it up. I was amazed.”

Lorraine added: “Having the bed was so important to us because, in his last few precious months, it meant fewer stays in hospital and we could make the most of his time with us.”

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