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

Sadie Stephenson, 32, lives in Thirsk with husband, Nathan, 32, and children, Florence, three and two-year-old Archer.

She began her career in advertising at The Press in York, before moving into marketing and on Sunday (April 14) she's running her first marathon - the Adidas Manchester Marathon - to raise money for the Williams Syndrome Foundation.

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York Press: Sadie Stephenson marathon trainingSadie Stephenson marathon training (Image: Supplied)

The foundation helps children and adults with Williams Syndrome, a disability and a rare genetic disorder which affects Florence.

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 turns four in MayFlorence turns 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.

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

Sadie said: "At the moment Florence doesn't really have a lot of speech, she has to have a routine and when there are any changes she can be very emotional, but on the plus side she is an extremely loving little girl, which is something you get with Williams.

"She wants to wave at people and to hug everyone."

York Press: Florence is a very loving little girlFlorence is a very loving little girl (Image: Supplied)

Sadie said although it's been hard to find time for training around work and home life, she's managed one long run every week ahead of Sunday's marathon.

"All I want is to just get over the finish line," she said.

"Whilst I am hoping to raise as much awareness and money for this small grass roots charity as possible, more importantly I want to address stigma and change the perception of disability, in my view it should be seen as unique ability, not disability."

So far Sadie has raised £2,279. To show your support go to:

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