A Skegness family are raising money for their son – who suffers with a range of debilitating conditions – to see a specialist in Barcelona.
James Bates, a 21-year-old, has struggled with severe heart, spine and tissue conditions since birth, including Ehlers-Danlos Syndrome and scoliosis.
During his second heart surgery at four-years-old, Jennie Bates, the boy’s mum, said: “Part of his heart wall literally disintegrated in the surgeon’s hands.”
Now, his scoliosis – a curve of the spine – has become increasingly worse as he has grown older and is now causing severe back pains and breathlessness.
With doctors in the UK saying his other conditions make surgery to straighten his spine too risky, the family are now looking to raise money for a second opinion from a specialist in Spain.
Ms Bates said: “When you have a child like James, you should always seek a second opinion.
“If the specialist says to me that it’s too risky, then I’ve had that second opinion and I’ll have to accept that.”
A second opinion from this doctor could cost £5000 and would confirm whether James’ spine is reducing his lung function. If that is the case, life-changing surgery could be an option for James.
Susan Booth, chief executive of Ehlers-Danlos Support UK, said that the charity was constantly working to ensure better diagnosis, treatment and management was available to more patients. She said it was working to “embed proper pathways of care” in the UK.
One example of the family’s fundraising is a 2026 calendar featuring photography by James’ teen brother Alfie.
It is now available through their Facebook page, Photography by Alfonso.
