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.<\/p>\n
For the second year running, Halstead Town Football Club will host the Leo\u2019s Lions charity football match and family fun day on Sunday, with gates opening at 11am.<\/p>\n
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.<\/p>\n
Leo Taylor, who has a rare KCNB1 genetic disorder, with parents Hannah and Rich. Picture: Contributed.<\/p>\n
The condition, which only a few hundred children worldwide are thought to have, causes a range of issues \u2013 including developmental delay, intellectual disability and recurring seizures.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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\u2019s needs.<\/p>\n
This means that Leo requires constant, round-the-clock monitoring to manage frequent epileptic seizures, sleep disturbances, and a risk of aspiration.<\/p>\n
\u201cThings are really difficult at the moment, with Leo\u2019s seizures and night makes us incredibly tired the next day and it\u2019s a constant circle,\u201d Hannah told the Suffolk Free Press.<\/p>\n
\u201cHis condition is so rare that there isn\u2019t enough research or information regarding KCNB1.<\/p>\n
\u201cWe estimate that around 200 kids in the world have this genetic mutation and it\u2019s a spectrum in itself, so it varies between them.<\/p>\n
\u201cI have to be strong for Leo, but it\u2019s extremely exhausting \u2013 he\u2019s generally a happy boy, but can be triggered very easily and, where he is nonverbal, it\u2019s hard to help.<\/p>\n
\u201cIt\u2019s taken a huge toll on mine and my husband\u2019s relationship, but we are united and strong for him. I will never stop fighting for his basic needs and continue to be his voice.\u201d<\/p>\n
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\u2019s vital physiotherapy.<\/p>\n
For this year\u2019s event, Hannah decided they wanted to support East Anglia\u2019s Children\u2019s Hospices, and The Bumblebee Children\u2019s Charity \u2013 two charities which helped them through difficult times.<\/p>\n
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.<\/p>\n
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.<\/p>\n
Despite the many challenges, she added that Leo was generally a very happy boy who \u201cloves affection\u201d, and likes to \u201csay hello to anybody he sees, often bringing a smile to a complete stranger\u201d.<\/p>\n
\u201cWords cannot describe how we feel about our Leo,\u201d said Hannah. \u201cHe is our warrior. He brings so much joy to us.<\/p>\n
\u201cHe has taught us so much and we are so grateful to the KCNB1 community we found and able to share our experiences.<\/p>\n
\u201cWe will continue to be his voice and celebrate every milestone no matter how small.\u201d<\/p>\n
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.<\/p>\n