Joanne McBride’s daughter Freya, now 10 months old, suffers from Kawasaki disease, which causes blood vessels to become inflamed.
The Sprotbrough baby was the youngest person in the country to be diagnosed with the condition, which can be fatal if left untreated.
The disease is difficult to detect and Freya’s heart was damaged in the 13 days it took for her to be diagnosed – but Joanne is now planning a charity fundraiser to mark her turning one.
The event, which will be held on April 10, has been organised for family and friends. All funds raised will go to the Cosmic Kawasaki Disease Research fund.
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Entertainment at the event, in St Mary’s Church Hall, Sprotbrough, will include face painting, balloon modelling, jewellery making and a cake sale.
Joanne, who has two older children, Eliza, 11, and Finlay, six, said: “Thinking about celebrating Freya’s first birthday is surreal. Six months ago we couldn’t think about looking this far into the future.
“I never believed she was going to survive this, and now we are looking forward to this milestone. We are excited about using it as an opportunity to give something back and turn it in to something good.
“We don’t want every one of her birthdays to be about this disease, but I’m sure she will forgive us for sacrificing her birthday this once to raise money for research that might save another child’s heart from suffering because of Kawasaki disease.”
The youngster is due to have another heart echo scan, which will reveal whether her arteries have reduced in size, on February 22. When Freya was first diagnosed with Kawasaki disease, her arteries were the size of an average adult. By August, they had reduced to the size of a five-year-old’s following treatment. Since then there has been no change. But, Joanne, aged 40, remains optimistic.
“It’s good news as things haven’t got any worse. The prognosis is good, research shows girls go on to heal completely, so we have a fighting chance the size of her arteries may reduce or she may just grow in to them.
“And she’s doing really well. She’s very cheeky, you wouldn’t know that there was anything wrong with her. ”
Search for Freya’s Story on Facebook for more information. Donate at www.virginmoneygiving.com/giving and search Joanne McBride.