The family of a young boy with a rare genetic condition have vowed to continue fighting to give him a voice, ahead of a football-themed fund-raiser this weekend.
For the second year running, Halstead Town Football Club will host the Leo’s Lions charity football match and family fun day on Sunday, with gates opening at 11am.
The day is in solidarity with four-year-old Leo Taylor, of Little Waldingfield, near Sudbury, who was born with a disorder caused by mutations in the KCNB1 gene.
Leo Taylor, who has a rare KCNB1 genetic disorder, with parents Hannah and Rich. Picture: Contributed.
The condition, which only a few hundred children worldwide are thought to have, causes a range of issues – including developmental delay, intellectual disability and recurring seizures.
Since his birth in January 2021, there have been many challenges for Leo and his parents, Rich and Hannah, due to the lack of information about the disorder.
Hannah explained that it took almost two years for Leo to be diagnosed, after they repeatedly raised concerns with doctors about his delayed development, including mobility difficulties and speech delay.
Having given up her job to care full-time for Leo, while her husband works during the day, she revealed that their daily routine was very difficult, because the complexity of her son’s needs.
This means that Leo requires constant, round-the-clock monitoring to manage frequent epileptic seizures, sleep disturbances, and a risk of aspiration.
“Things are really difficult at the moment, with Leo’s seizures and night makes us incredibly tired the next day and it’s a constant circle,” Hannah told the Suffolk Free Press.
“His condition is so rare that there isn’t enough research or information regarding KCNB1.
“We estimate that around 200 kids in the world have this genetic mutation and it’s a spectrum in itself, so it varies between them.
“I have to be strong for Leo, but it’s extremely exhausting – he’s generally a happy boy, but can be triggered very easily and, where he is nonverbal, it’s hard to help.
“It’s taken a huge toll on mine and my husband’s relationship, but we are united and strong for him. I will never stop fighting for his basic needs and continue to be his voice.”
In 2024, the family received a helping hand from Halstead Town FC, after her friend Meg Sharman arranged an event with the club, raising thousands of pounds towards the cost of Leo’s vital physiotherapy.
For this year’s event, Hannah decided they wanted to support East Anglia’s Children’s Hospices, and The Bumblebee Children’s Charity – two charities which helped them through difficult times.
Alongside the match, which kicks off at noon on Sunday, there will be games, stalls, a raffle, food, drink and more, with admission free for all ages.
Hannah also confirmed that, after many difficulties in securing a education, health and care plan (EHCP), Leo now has a place at Hillside Special School in Sudbury until the age of 16.
Despite the many challenges, she added that Leo was generally a very happy boy who “loves affection”, and likes to “say hello to anybody he sees, often bringing a smile to a complete stranger”.
“Words cannot describe how we feel about our Leo,” said Hannah. “He is our warrior. He brings so much joy to us.
“He has taught us so much and we are so grateful to the KCNB1 community we found and able to share our experiences.
“We will continue to be his voice and celebrate every milestone no matter how small.”
In addition to the charitable fundraising, the family are also welcoming donations to help with the cost of specialist equipment and other future support for Leo.
Contributions to this cause can be made online at gofund.me/b3ebc7e0.