THE mum of a three-year-old girl from North Yorkshire with an extremely rare congenital disorder battled through a marathon to raise awareness of the condition.

As The Press reported last week, Sadie Stephenson, 32, who lives in Thirsk with husband, Nathan, 32, and children, Florence, three and two-year-old Archer ran her first marathon - the Adidas Manchester Marathon - to raise money for the Williams Syndrome Foundation on Sunday (April 14).

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York Press: Sadie during the raceSadie during the race (Image: Supplied)

Sadie, who began her career in advertising at The Press in York, before moving into marketing, has so far raised £3,689 for the foundation which helps children and adults with Williams Syndrome, a disability and a rare genetic disorder which affects Florence.

York Press: Sadie with Florence and Archer Sadie with Florence and Archer (Image: Supplied)

Speaking after the race, which Sadie completed in about five hours, she said: "By some miracle I made it!"

I found the whole race hard, I thought because I had done all my training runs i would be fine, but having people to talk to helped and people at home tracking my progress.

"There were a couple of ladies handing out satsumas on the course and they are Florence's favourite fruit, so that kept me going. I also had a toy frog with me that had been given to Florence.

"Nathan was a massive support. Around mile six I was feeling anxious, I had a quick video call with him, he gave me a pep talk and kept me going.

"I want to give him a massive shout out and to my friends and family who came to watch me and followed me at home and to everyone who shared the page, also to my dad, Paul Pattison, who came on his bike with me while I was training.

"I'm thrilled because the amount of money we've raised will have such a big impact for the charity."

As The Press previously reported, at just six weeks old the doctor discovered that Florence had a heart murmur and further investigations discovered she had three different heart conditions.

"It was terrifying," said Sadie.

"And because we had been in lockdown it was a really tough time.

"Florence started having heart scans every three or four months in order to get to the bottom of things, we had a genetics test and it was diagnosed as Williams Syndrome.

"We had never heard of it. I immediately Googled it and discovered it was so rare that the NHS didn't even have a page for it and that scared me.

"There are so many symptoms and attributes that come with having Williams Syndrome, including heart disorders and delayed cognitive development to name a few.

"As only 1 in 30 doctors come across Williams, the foundation have been the utmost support to us as a family, educating us how to help Florence physically, mentally and emotionally."

York Press: Florence will be four in MayFlorence will be four in May (Image: Supplied)

Williams Syndrome (WS) occurs randomly and affects around one in 18,000 people in the UK. It is non-hereditary and causes distinctive facial characteristics and a wide range of learning difficulties.

Children often have delayed development and can develop physical and mental health problems, including anxiety and depression in later life. WS people tend to be talkative and excessively friendly towards adults.

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York Press: Sadie after the race with friends Fiona Potter and Laura StephensonSadie after the race with friends Fiona Potter and Laura Stephenson (Image: Supplied)