A specialist buggy is ensuring the everyday comfort of a life-limited five-year-old from Northern Ireland, but also means he can safely enjoy a once in a lifetime holiday at the Give Kids the World Centre in Florida.
Jamie Close from Belfast had a manual wheelchair provided by his local statutory services, but it was unable to transport the oxygen and other medical equipment he needs with him at all times. The chair also did not have weatherproof covers or a hood, so leaving the house was often not possible for the youngster – something which affected the whole family.
Jamie has Bohring Opitz Syndrome which is characterised by feeding difficulties, abnormal posture and learning difficulties. He has poor head control, no mobility and rarely cries.
Without the buggy Jamie’s options for getting out into the local community were limited. However, funding for a specialist buggy was not available from statutory services, prompting Jamie’s parents Carla and David to turn to leading children’s disability charity Newlife Foundation for help in providing a £1,950 buggy.
Carla said: “Although the wheelchair was initially good for Jamie’s postural support, it was made wider to accommodate a chest brace and he began slipping down in the seat. It was also so heavy I couldn’t move it on my own. The new buggy is perfect – it’s made such a difference and totally changed all aspects of our lives already.”
As well as having a specially designed place for medical equipment, the buggy will support Jamie’s body properly and protect him from the wind and rain – which will reduce the risk of him coughing and vomiting. It means they can all go out together as a family and make precious memories.
Jamie’s much anticipated holiday to stay in the Give Kids the World Centre in November will now be a more comfortable experience thanks to Newlife.
Carla added: “Even Jamie’s sister Lara who is seven said she was glad he would be protected from the sun in Florida now! He will be so comfortable going round – it will make the holiday!
“We are gobsmacked that we were able to have the equipment so quickly and words just can’t explain how grateful we are to Newlife.”
Carla and David fully support Newry grandmother Lorraine McMahon’s campaign to help more families of disabled and terminally ill children in Northern Ireland and are already considering ways in which they can help.
Lorraine has launched an awareness and fundraising campaign – Lorcan’s Legacy – in memory of her young grandson who passed away earlier this year, aged 22 months. Lorcan 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. In desperation she turned to Newlife who 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.
“We met Lorcan at a hospice last year and chatted with Lorraine. I think what she’s doing is amazing and we want to help her fundraise and raise awareness so other children in Northern Ireland can be helped too.”
The charity is currently working with five families in County Antrim to fund equipment grants totalling £15,627. Newlife needs £100,000 a year so it can continue to help families in the six counties in Northern Ireland – and Lorraine is 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).
Pictured: Jamie Close
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