Connie and her mum, a self-employed make-up artist and beauty therapist are preparing to go to Great Ormond Street Hospital in London
A young girl from Co Armagh is preparing to go to Great Ormond Street Hospital to receive treatment for a rare disease that leaves her immune system unable to fight off infections.
Eight-year-old Connie has been in and out of hospital her whole life and always seemed to get sick and develop infections that required multiple doses of antibiotics to clear.
For years her mum Carrie McKeown felt something more serious was going on with her daughter as she couldn’t understand why Connie was constantly developing infections and struggling to fight them off.
Two years ago the young girl from Bleary got her ears pierced which led to her developing a serious infection that eventually required multiple surgeries to remove, however afterwards her surgery wounds would not heal.
Eventually blood tests were carried out which showed that Connie had a rare immunodeficiency disease called Chronic Granulomatous Disease that stops her body from fighting off certain bacteria and fungi. She is the only girl in Northern Ireland to be diagnosed with the disease.
Connie is now preparing to go with her mum to Great Ormond Street Hospital in London to receive treatment for CGD which will include chemotherapy and a life-saving bone marrow transplant even though she does not have cancer.
Speaking to Belfast Live, Carrie said: “I always knew there was something more that was causing Connie to develop all of these infections and I had spent years asking doctors to do more tests to see what was going on.
“Ever since she was a baby she has constantly developed ear and nose infections that would take her four or five courses of antibiotics to clear and this went on for a very long time. It was not until after she got her ears pierced a couple of years ago and developed a granuloma on the back of her ear that required surgery to get rid of that we were finally able to get further tests done.
“When her diagnosis came back it was disappointing because it was not the answer that we wanted but at the same time at least we had something and knew what are dealing with. Chronic Granulomatous DiseaseCGD means that part of connies immune system cannot properly fight certain bacteria and fungi, making her body more vulnerable to serious infections and inflammation and she has been put on profolactic medicine until she is able to go over to Great Ormond Street.
“While she is due to undergo a bone marrow transplant and chemotherapy, Connie does not have cancer, it is just the treatment that she requires and there is a possibility that if the transplant is successful then it could cure her.”
Carrie is a self-employed make-up artist and beauty therapist who also has two four-year-old twin daughters to care for but has been unable to work recently due to ongoing hospital appointments and stays with Connie and is unable to return to work until six months after they return from London.
Her friend Carla has setup a GoFundme page in order to help Carrie and her children with the financial pressures they face due to their current circumstances and has thankfed everyone who has supported it so far with it raising over £6,000 in three days.
Carla said: “With everything Connie has been going through it has been very hard for Carrie to work and due to being self-employed there is no real support out there for her when it comes to things like this. She still has her mortgage, bills to pay and children to care for and I wanted to do something to help her while she is away with Connie in London getting the treatment she needs.
“So far the response to the appeal has been incredible and I am so thankful to everyone who has donated to help Carrie, Connie and the twins.”
If you would like to donate to the fundraiser you can do so via this link.
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