The mum of a young girl who was recently diagnosed with Osteopetrosis and is currently waiting for a bone marrow transplant has thanked those who donated to her fundraiser.
Alice Knott's daughter Connie was diagnosed with the very rare condition that affects both the way her blood cells work and the rate at which her bones grow.
Connie was diagnosed two weeks ago while still less than three months old and is currently waiting for a bone marrow transplant that will take place at Great Ormond Street Hospital for Children.
Alice told The Packet: "Connie's got a really rare condition, I think there's only three other people in the country who have got it.
"She's only 13 weeks old so its been a bit of a whirlwind to be honest.
"When she first got diagnosed they thought it was Leukaemia, so we rushed to Treliske and they suspected Leukaemia, then the next day we were airlifted to hospital via the air ambulance.
"Following an MRI scan they discovered her bones were sightly abnormal.
"She also has Nystagmus in her eyes and she can't hold focus on things, and through further examination they think Connie's got quite significant sight loss."
Alice described Connie's condition as "It's a rare bone disease and instead of your bones growing at a normal rate and thickness, they're growing thicker.
"Bone marrow keeps your bones growing at a normal rate, whereas Connie doesn't have any, so her bones are getting thicker and thicker.
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"If it's left untreated it is fatal, so Connie is waiting to a bone marrow transplant and Great Ormond Street, they're searching for a donor for her at the moment.
"That's going to be her lifesaving treatment that she needs, but with that comes a lot of complications with her condition, like her sight loss, she'll probably be registered as blind."
Since being made aware of Connie's condition, Alice has decided to set up a fundraiser to help support her family through and the reaction it has since received from the community has blown her away, having raised just over £6,500.
Alice explained the feeling of getting such a response from the community as being "absolutely amazing," saying: "I can't thank everyone enough.
"When I set it up, I'd cried all the way to the hospital, and I'd seen a young Irish girl with Osteopetrosis whose mum had set one up and been doing lots of different fundraising activities, and I thought 'that's just what I want to do.'
"I really didn't think It would get that sort of reception, within a few minutes people were sharing it and putting in hundreds of pounds!
"I was just so shocked, I couldn't believe it, it was like 'oh my gosh!'
"There are people that have put in big amounts of money, but what I find really touching as well is when I see people who don't have massive amounts of money putting in little bits, they probably can't spare a lot but he fact they're giving it to Connie is so lovely.
As well as the fundraiser set up by Alice, Amanzi South African Restaurant in Falmouth will be holding a fundraising lunch on Saturday November 13.
The restaurant will be holding a three course lunch in order to raise funds for Connie's treatment.
If you'd like to donate to Connie's fundraiser, visit: gofundme.com/f/connies-osteopetrosis-journey
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