Rare genetic disorder kills dad (40)
The wife of a loving dad who died from a rare genetic disorder is pleading with the medical profession to learn more about the condition, to save other families from heartache.
Richard Stanworth (40) suffered from Loeys-Dietz Syndrome, a genetic disorder that increases the likelihood of aortic aneurysms and tissue defects, and was only discovered by the medical profession 10 years ago.
Mr Stanworth died on February 24th after being taken ill a few days earlier. He was airlifted to Blackpool Victoria Hospital and had been due to have surgery next month to repair his aorta.
His beautiful two-year-old daughter, Elsie, has already been diagnosed with the condition but the early diagnosis means doctors will be able to treat the threat of aneurysms with medication.
Just before Mr Stanworth’s death, he and his wife, Dawn, had learned that their three-month-old son, James, is not affected by the disorder.
Devastated Mrs Stanworth says she wants more family doctors to be aware of the syndrome so other families can be spared heartache.
Her husband had had the condition all his life, but it was only in 2013 that it was confirmed and he had a first operation.
“A lot of doctors don’t know about the syndrome, so we need to raise awareness,” she said. “There’s a need for more information. A young boy was diagnosed with the condition because a doctor recognised it after seeing Elsie.”
Mr Stanworth was born in Burnley and the family live in Ightenhill. He was brought up in Wales and returned to this area to further his sales career with Schneider Electric, a major supplier of industrial electrical equipment. He enjoyed being with family and friends, and going for meals at the Fencegate.
Always active and gregarious, Mr Stanworth also liked meeting up with long-time friends in Wales, and the family were spending a few days there when he was taken ill.
“Richard fell ill on Friday,” said Mrs Stanworth. “He was admitted to the hospital in Bangor but they didn’t have the expertise to care for him and arranged a transfer straightaway. The Search and Rescue Service flew him up to Blackpool and he had the surgery on Saturday morning.”
Mrs Stanworth was able to stay near her husband in emergency accommodation provided through the Blue Skies Hospital Fund, a local charity. “I’m so grateful I could stay,” she said. “It meant I could get to Richard’s side straightaway when they called me in the middle of the night. I would not have been able to get there if I had been at home.”
Mr Stanworth’s funeral is tomorrow at 10am, at St Anne’s Church, Fence, and 11-20am at Burnley Crematorium.
His family has asked for donations in his memory towards Loeys-Dietz research and for the Blue Skies Hospital Fund, to be made through Holgate’s Funerals in Fence.