A 33-year-old woman has died from an ultra rare condition which affects just one in six billion people – and is so unique it doesn’t even have a NAME.
Lyndsey Borman, 33, was described by her devastated family as a “warrior” after battling illness her entire life.
Before her tragic death she had suffered from pneumonia and septicaemia before overcoming stage four cancer last year.
Just last month, medics solved the mystery behind Miss Borman’s weak immune system when she was diagnosed with ARPC1B deficiency.
Sadly, it was this autoimmune disorder which claimed her life, and she died at Castle Hill Hospital in Cottingham, East Yorks., on Sunday (Feb 5).
The condition is so unknown that only one other person in the world, a nine-year-old boy from Holland, is known to have anything remotely similar to it.
Miss Borman’s family, who are now awaiting the results of a postmortem examination, have been told by doctors that she is likely to be included in future medical journals.
Sister Gail Borman, 53, paid tribute to Lyndsey, saying: “Lyndsey really was one of a kind. She was a unique case in more ways than one. She said to us after the diagnosis, ‘I’m famous at last.
“She was a warrior. So brave.”
Lyndsey’s other sister Carla Borman, 36, added: “We’re told the condition affects just one in six billion. That’s how rare it is.”
Miss Borman, who lived alone in Hessle, near Hull, East Yorks., had battled numerous infections, including pneumonia and septicemia, and spent time at London’s Great Ormond Street Hospital.
Lyndsey was diagnosed with non Hodgkin’s lymphoma in 2015 – but her family were told it is not thought the condition was linked to the auto-immune disorder which killed her.
After being diagnosed with ARPC1B deficiency last month, family members had recently undergone screening, with a view to donating some of their bone marrow, which represented the best chance of a cure.
Despite long periods of ill health, Lyndsey – who lived by herself with puppy Dolly – gained a degree in social work from the University of Lincoln and worked as an auxiliary nurse at the Spire Hull and East Riding Hospital in Anlaby.
“Lyndsey sailed through cancer,” said another sister, Niki Borman, 38.
“She was going to Marbella with me in May – she had been really looking forward to it and was so excited.”
Her 79-year-old father Alan Borman, of Hessle, East Yorks., said: “Lyndsey never complained and she would go to work caring for people – even if she was feeling poorly herself.
“She was a credit to us all.”
The family wished to thank Dr Pavels Gordins and Jackie Whittaker, a senior specialist nurse, and colleagues in Castle Hill’s immunology and haematology departments for their determination in diagnosing
Sister Carla Borman added: “If it wasn’t for them, Lyndsey would never have been diagnosed. It meant a lot to her knowing what she had and the reason for 33 years of illness.”
Friend Gemma Ullah, who set up a JustGiving page for her childhood friend, said: “I will remember her smile, her cuddles, her laugh and her sense of humour – I will just miss her so much.”
Lyndsey’s family intend to use the money to pay for a memorial and make a donation to the immunology and haematology wards at Castle Hill.
Miss Borman’s father, Alan, said: “We’d really like to thank everyone who donated. It means a lot to us all, and we’re really grateful.”
To donate, visit www.just.com and search for “Gemma Ullah”.
