Nazeing parent raising awareness of Stickler Syndrome following "intense" experience with her son
Tommy has been described as "an absolute trooper" and has been diagnosed with the syndrome
A Nazeing parent is trying to raise awareness of Stickler Syndrome and reduce diagnosis gaps, after her son failed his new-born screening test three times.
Alice's son Tommy was born with a cleft palate and struggles to see and hear.
He received a hearing aid at just seven months old.
She tells us Tommy is an "absolute trooper" and that he still enjoys lots of activities.
One in 10,000 people are affected by the syndrome in the UK, according to CLAPA, the UK's Cleft Lip and Palate charity.
She raises money for the charity, alongside Stickler Syndrome UK. They are trying to raise awareness and understanding of the condition.
Tommy was born in 2018 and failed his screening test three times. 24-hours later a midwife identified that he'd been born with a cleft palate due to feeding coming out of his nose.
Tommy failed his hearing test, and was also referred for a sight test. He received glasses and a hearing aid at just seven months old, and has had surgeries since his birth.
Alice describes Tommy as a "brilliant" child, who doesn't let anything hold him back.
"Tommy is an absolute trooper. Anyone that meets him comments on his character. He's like an old soul. Like he's been here before. He's fantastic. He is such a great advocate for himself.
He's great, he rocks his glasses, he rocks his hearing aids, always chooses little characters to have in his moulds. But what they don't see is the invisible struggles that he has to deal with daily. But he's adapted really well, like he doesn't let anything stop him. He wears prescription goggles for swimming, he wears contact lenses for jujitsu. He's just got his grey belt in jujitsu. Like he absolutely loves it.
"His hypermobility as well means that we were a bit worried that he wouldn't be able to do the things that other children can do, like ride a bike, but he absolutely smashed it and loves riding the bike. But his hypermobility means that he gets tired more quickly. His body is just generally working much harder than ours.
"He's a real advocate for stickler syndrome as well, he wears it like a badge of honour."
Alice praised the charities CLAPA and Stickler Syndrome UK for their help with Tommy, and hopes that other parents can use the charities to have a better experience after diagnosis.
She said that the syndrome isn't anything to be scared of.
Stickler Syndrome affects four areas in a person's body, the eyes, hearing, hyper mobility, and early-onset arthiritis.