Family of Aoife, 4, who 'brings joy to everyone she meets' raising awareness to Williams Syndrome

May is Williams Syndrome Awareness Month - something Pontefract tot Aoife-Brooke's family are all too aware of.

Monday, 10th May 2021, 4:16 pm
Aoife with her auntie, Maryleigh Parker.

The adorable four-year-old suffers from the rare congenital disorder that occurs randomly and affects around one in 18,000 people in the UK.

It's a condition that not many people know about, which is why Aoife's family is hoping to raise awareness while also raising funds for charity.

Aofie's auntie, Maryleigh Parker said: "Aoife had a very rocky start to life, which was heartbreaking to experience as a family.

Aofie is !the most kind, loving, empathic little girl you will ever meet."

"She was born at just 5lb 4oz and had a late diagnosis of Williams Syndrome.

"She suffered low birth rate and poor feeding. She would scream 24/7 in pain. She wouldn't settle, not even in the arms of family.

"She was starving herself due to the pain from the milk, which is a common sign of Williams Syndrome.

"She just wasn't feeding, wasn't sleeping and as a result she wasn't developing as a typical baby girl would."

Aoife with younger brother Lochlann and their mum Alisia.

Maryleigh said that Aofie still suffers with toileting, her sleep is minimal and her anxieties are high for a four year old.

Williams Syndrome (WS) is a non-hereditary condition and causes distinctive facial characteristics and a wide range of learning difficulties.

Infants often have delayed development and can develop physical and mental health problems, including anxiety and depression later in life.

Those with WS also tend to be more talkative and excessively friendly towards adults.

Fun loving: Aofie with mum Alisia.

Health wise, many have a narrowing of the aorta and other serious heart abnormalities can occur, although at the moment, thankfully, Aofie doesn't suffer any of them.

People with WS  share certain facial similarities, typically including a wide mouth, with a pronounced bottom lip, an upturned nose with flattened bridge, slightly high, rounded cheeks, irregular and/or widely-spaced teeth, starburst eyes and a squint.

"Despite all of this," Maryleigh said, "Aofie is the most kind, loving, empathic little girl you will ever meet. She adores animals and music and loves being outside at the park or farm."

Aofie also attends nursery, which Maryleigh says she absolutely loves.

"She loves to socialise with all of her friends and mainly her teachers, but it's obvious that her learning and development isn't 100 per cent and will more likely need support going forward.

"The plan is for Aofie to be attending a mainstream school, but we're still figuring out the support available for her as many people have very limited knowledge about Williams Syndrome."

Which is what Aofie's family are trying to change.

The month of May is Williams Syndrome Awareness Month, and as a family, they have decided to raise awareness with 'One Step at a Time' by completing 10,000 steps a day (310,000 in total), trying to raise more awareness along the way and raising money for the charity that helps all families in the UK - Williams Syndrome Foundation.

Maryleigh said: "We're going out sporting our t-shirts and hoping people take note or stop and ask us questions.

"We're raising money through donations as well as hosting a raffle to be drawn at the end of the month, which we've had 26 local businesses donate amazing prizes to our cause."

To find out more and to donate, visit the Walk4Williams JustGiving page or visit the Walk for William's Syndrome Facebook page.

Maryleigh said: "This originally started as just me wanting to spread more awareness to a cause so close to my heart with a target of £400. But slowly we have come to realise what joy Aofie brings to everyone she meets, even if it was just in passing.

"We've been overwhelmed by the support and the £700 we have raised, but we want to keep going.

"We have the month of May in front of us and spreading awareness, making the condition more known, is our main aim and key to helping and supporting individuals with Williams Syndrome."