A severely ill Northampton woman, who has waited eight years for a rare bone marrow disease diagnosis, will host a charity ball to thank two charities who helped detect her condition.
Emily Rootes, 22 of Kingsley, has an uncommon disorder teamed with an autoimmune condition, which makes her allergic to her own bone marrow.
Since she was 14, Miss Rootes has suffered from anaphylactic attacks that caused her body to swell and has since found herself in need of an urgent bone marrow donor.
She said: “Most people’s bone marrow releases chemicals every day but mine cannot combat the chemicals steadily.”
Researchers are starting Miss Rootes on a rare drug from the United States, which has been licensed by the Government for use in the UK this year, but she has better chances of a healthier life if she can secure a donor.
Miss Rootes had 19 hospital admissions last year as a result of the attacks, with stays in intensive care of up three weeks.
She said: “I’m hosting a massive charity ball to raise money for the charities that fought for my diagnosis and paid for the research into the treatment for my condition. The other reason for the event is to find me a match for my donor - Anthony Nolan will be there on the night to help people join the register if they wish.”
Miss Rootes, who lived on her own at 16, now needs around-the-clock care and is wheelchair bound.
Recently, she has been told to give up working and has since had to study part-time at the University of Northampton.
Miss Rootes added: “I’ve had to miss out on things such as girly holidays to Greece and Disneyland Paris because we never know when I’ll be in the hospital.”
Emily told the Chron that she suffers from a state of confusion when she has the attacks and has had a pacemaker fitted due to her underlying heart problem.
“Through being in the hospital, I have met loads of people who need transplants and transfusions. If I get 10 people on the register, then I’ve done a great job.”
The ball is set to take place on the November 5 at Northants County Cricket Ground and will play host to a charity raffle auction, a disco and live band, “The Usual Suspects.”
Tickets cost £30 and the event is due to start at 7pm.