A COVENTRY boy born with half a heart has received support from a national charity after benefits used to provide vital 24-hour care were cut on his eighth birthday.
Ben Gamble has one of the most complex congenital heart conditions meaning he only has one working heart pump instead of two.
Despite his uphill battle against severe fatigue, loss of social time and suffering from blood clots increasing the chances of a stroke, government officials have taken a large proportion of Ben’s benefits away as he can walk 50metres at a ‘normal pace’.
Although Ben has had repeated surgery, it is only palliative and not curative – meaning his heart will never be normal.
Though a heart transplant could help the eight-year-old achieve adult life, Ben is having to learn to live with the restrictions having just half a heart creates.
Now, Ben has received the full backing of Little Hearts Matter – a charity that works with anyone affected by a single ventricle heart condition.
In a letter of support for Ben, Suzie Hutchinson, chief executive and service lead for Little Hearts Matter, said: “I am writing in support of an application and appeal for disability care and mobility allowance.
“Ben is using up a huge amount of energy walking up the hill to school, just the reduction in this trip would help him achieve at school and allow him some energy at home.
“Most children run at 100 per cent energy level at rest and are able to increase that to 500 per cent on activity.
“However Ben runs on a normal energy level of less than 50 per cent which can only rise very little when active.
“Not being able to keep up with his friends is a major issue too, if you add this to his extreme fatigue you can understand why he is feeling extremely isolated.”
His condition means the Whitley resident often struggles with fatigue, with experts at the charity describing Ben only has energy for two sections of the day out of three – those sections being morning, afternoon and evening.
Like all children with a complex heart disease, Ben requires more calories than his peers to run his inefficient heart while also taking various medication including Warfarin – which reduces the speed at which his blood clots.
Suzie added: “I have a huge amount of expertise in understanding the day to day needs as well as the pathway through treatment.
In the past little has has been understood about children and young adults with single pump hearts because until recently they did not survive into late childhood.
“Ben needs to extend into home life, medical care, school life and beyond for the chance for him to play, develop and enjoy his life within his cardiac restrictions.”
City Councillor Ed Ruane, cabinet member for children and young people, said a child who already suffers from pain and misery shouldn’t be forced to suffer even more.
He added: “Ben Gamble’s case is not an anomaly or accident of a flawed system with good intentions.
“It’s the human consequence of this government’s active decision to bring in what they call ‘tougher’ measures.
“Measures such as significantly increasing the amount of money they were able to take from sanctioned disabled and chronically ill people.”
