Leeds > London
200 miles
At 16 months old Ben was diagnosed with a rare neurological disorder called SCN2A with epileptic mutation. He is one of 700 people in the world that have been diagnosed with his disorder and he is the only child globally that has this disorder with epileptic mutation.
This rare disorder is caused by a faulty gene that disrupts the signals between Ben’s brain and body. Because of this, Ben has many neurological issues including developmental delay, autism and epilepsy – Ben suffers regular tonic seizures often ranging from 10-20 each day.
A common cause of the seizures is his feed – Ben cannot swallow or digest normally and so is fed with total parenteral nutrition (TPN). When he is fed his body triggers a neurological response that causes seizures. With this ongoing neurological response, his feeding declined whilst at home which caused him to have more severe seizures and he needed to be treated and care for in hospital.
Ben has lived in hospital for three years (most of this life) and has been home for a total of three months in that time. Due to these long stays in hospital, Ben rarely gets to see his mum and twin Harry which is really tough on the family. Ben’s dad spends his life dedicated to Ben, sleeping in the hospital with him, trying to find out more about his rare disorder in order to manage it better. For Ben and his family, it is vital they find a way to feed him safely and manage his condition at home in order to improve Ben’s quality of life.
To help stabilise Ben’s condition and learn more about his disorder, Lucy Air Ambulance for Children (Lucy AAC) flew Ben 200 miles from Leeds General Hospital to Great Ormond Street Hospital in London for neurological investigations. This included dysmotility tests that aimed to uncover more information about his gene mutation and his body’s response to feeding. With this information, we hope that it will give more guidance on how Ben’s family can safely feed him and care for him at home and prevent readmission to hospital.
Lucy AAC were the only charity that could fly Ben safely from Leeds to London for these specialist investigations. With the frequency of Ben’s seizures, if he travelled by road ambulance and had a seizure during the long journey then the ambulance would have to divert to the closest hospital on route. This was a real concern for Ben’s dad as they wouldn’t have any information about Ben’s extremely rare disorder which is vital in this situation.
Instead, the Lucy AAC flight team did a full handover with his medical team in Leeds and were made aware of the complexities of his condition. They were able to respond to any seizures that happened during the journey and could treat him safely in the road ambulance and in the air.
Our aeroplanes also provided Ben with an infection-free environment to travel in. It is essential that Ben doesn’t catch an infection as his temperature spikes which causes more frequent and detrimental seizures.
Ben’s Lucy AAC transfer gave his family the chance to learn more about his disorder, and his specific gene mutation. We hope that this further information leads to Ben being discharged from hospital and able to be cared for at home by his family.
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