Like most new mums, Joanne McBride can’t wait to celebrate the first Christmas with her eight-month-old daughter, Freya.
Unlike most new mums, however, she will have to begin the day by giving her baby girl aspirin.
This is because Freya suffers from Kawasaki disease, a rare condition which causes the blood vessels to become inflamed and swollen.
“We are hoping to have a very family-orientated Christmas. I normally go overboard with the presents, but this year I haven’t. This year it will be about having quality time with the family.
“Both sets of grandparents will be coming over for Christmas dinner, including mine from Kent, and my father-in-law will be travelling over from Thailand. It will be a very special day. It does feel extra special now with have Freya,” said Joanne.
Freya was just two-months-old when she became the youngest person in the country to be diagnosed with Kawasaki disease, which can prove fatal if left untreated.
The condition is difficult to detect, meaning Freya’s heart was damaged in the 13 days it took for her to be diagnosed, but her mum is grateful to be celebrating the Christmas she feared they would never see. There were points this year when we just didn’t know what was going to happen. We were to caught up in the moment when Freya was in hospital and for a while it was difficult to look to the future without thinking we were somehow jinxing things.
“It’s been like that up until recently, but now I feel like we can start moving forward.
“Freya isn’t necessarily any better than she was a few months ago, but she isn’t any worse either. Her arteries are still bigger than they should be for a baby of her age.
“Her heart has been damaged by Kawasaki disease and we still just don’t know what the future holds for her. That’s frustrating, but it’s also quite cathartic.
“I realised that there’s no point anymore trying to find all the answers. The condition is so rare that even the specialists don’t know all the answers so I now know there’s no point in me trying to find them on the internet.
“All we can do is just enjoy time with Freya and hope that she is happy and healthy throughout life. We are now focused on making the best of what we have - starting with a family-focused Christmas.”
Joanne, aged 40, is also looking forward to the New Year, hoping that it will kickstart a more positive period in the family’s lives.
“I don’t want Freya to be defined by Kawasaki disease,” she said. “She is a baby first and Kawasaki comes second. Apart from Freya being born, obviously, this year has been pretty awful.
“I’m looking forward to leaving the year behind, I want to put a lot of my energy next year in to raising awareness of Kawasaki disease and making sure parents are well informed.
“I got a letter from Jeremy Hunt saying that there are 60,000 rare diseases in the UK, so it is no wonder doctors didn’t know anything about it, but that also makes it even clearer to me that parents need to know what to look for so they can ask the questions.
“I also want to raise some money for a Kawasaki charity. I want to give something back, and then I want to leave it all behind.
Joanne, who has two older children, Eliza, age 11, and Finlay age six, said Freya is her family’s Christmas miracle.
“She’s an absolutely amazing little girl, she’s our little miracle. She’s teething at the moment, but we’ve not heard a thing from her. We wouldn’t have known if we hadn’t seen the teeth, but I guess that’s because she’s made of tough stuff. She’s already been through so much, but she still wakes up with a big smile on her face every day.”
Freya still has regular hospital appointments, including cardiac check-ups, and in future she is likely to have an MRI scan.
To follow Freya’s story, visit Joanne’s blog at www.bluemama.co.uk or search for Freya’s Story on Facebook. To donate towards research in to Kawasaki disease visit www.virginmoneygiving.com/fund/KawasakiDiseaseResearch.