Video: Amber Spong spoke to an Eastwood family aiming to fund Koolen-de Vries research
The family of a baby born with a one-in-50,000 genetic condition in Eastwood is raising money to help fund its research.
Eight-month-old Brodie Wyatt was born with Koolen-de Vries syndrome, a disorder which delays development and causes a mild to moderate intellectual disability and is the youngest child in the UK with the condition.
Those that have the syndrome often have distinctive facial features including a high, broad forehead, droopy eyelids, a bulbous nose and prominent ears.
Mother Kelly Wyatt said: “It was a punch in the gut really – it took me a while to come to terms with it.
“I was scared if I go out and leave Brodie with the grandparents or something, he would have a fit while I’m not there.
“I think the case of me and Brodie being at the hospital a lot has affected his brother too.
“We are strong as a family and we will not let it destroy us.”
Most babies can hold their head up and look from left-to-right by the age of six months, however Brodie is unable to do so.
Kelly said: “He’s got low muscle tone and he’s got no strength support-wise at all.
“His head is all over the place – he’s getting a bit stronger but he’s still very floppy.”
To get answers, Brodie’s family are fundraising to find out how to improve their baby’s life.
Father Daniel Wyatt said: “Not knowing what the future holds is very worrying.
“We’re trying to raise around $1,000, around £700, to go to the Koolen-de Vries foundation because I need more answers than what the doctors have at the moment.”
The fundraiser is taking place in Eastwood this month and the family have gained support from the local community.
Daniel said: “We’re just trying to raise awareness of it and it helps to see others willing to contribute.”