As parents Amanda Kane and Robert Francey prepare for their fragile young son’s discharge from hospital, they realised that not all of the specialist equipment they will need to help care for Noah is available through local statutory services.
Noah has a number of conditions which affect his brain. Dandy Walker Syndrome affects the part which coordinates movement; lissencephaly is a rare neural condition which causes difficulty in swallowing and polymicrogyria can result in seizures. He uses oxygen regularly and requires suctioning to prevent him from choking.
Key to their being able to get Noah around and about their home town of Lisburn with his older brother Lucas is a specialist buggy that will safely accommodate all his emergency equipment – oxygen cylinder, suction and feeding pumps and specialist monitor.
Noah’s occupational therapist advised the family to contact leading UK children’s disability charity Newlife Foundation for help to access this costly equipment. Newlife has worked with more than 300 families across Northern Ireland, many of them facing similar barriers to getting the equipment they need to help care for their life-limited children.
Recognising the urgency of the situation, Newlife delivered the buggy to the Ulster Hospital in Belfast last month (December), so Noah has an alternative to being in bed and his parents can prepare for him going home in 2015.
Amanda said: “We are currently working with the hospital on a discharge plan for Noah; he will need quite a lot of care at home. Getting this buggy is important to us because there are none available through statutory services and we will need the specialist equipment if we want to take him out anywhere. It will enable us to do simple family things like take Noah and Lucas to the local park.”
She added: “Having it in time for Christmas meant that we were able to take Noah for a walk around the hospital for a change of scenery.”
Amanda, Robert, Lucas and Noah celebrated Christmas Day at the hospital with an extended family get-together in the family room where little Noah was able to meet some of his relatives for the very first time. Amanda added: “It was an alternative to him being in bed and meant we could spend time together as a family.”
Pictured: Noah Francey