Family overwhelmed after club donates specialist equipment for Freddie
PUBLISHED: 14:17 25 May 2018 | UPDATED: 07:42 29 May 2018
A mum from Yatton is 'overwhelmed' at the generosity of a rugby club which has donated specialist equipment to help her son who suffers from a rare genetic condition.
Members of Gordano Rugby Club, in Portbury, held a number of fundraising events to pay for a hot tub and swing for Freddie De Gennaro.
Nine-year-old Freddie suffers from mucolipidosis type three (ML3), which can affect his bones, joints and other organs, and he also has epilepsy, autism and attention-deficit hyperactivity disorder (ADHD).
ML3 is a rare and progressive metabolic disorder which involves the body’s ability to break down certain fats.
Symptoms include developmental delay, joint pain, thickened skin, heart valve abnormalities, and intellectual disabilities or learning problems.
Freddie is at constant risk of seizures and has the same developmental skills as a nine-month-old baby.
His mum Justine says the equipment has made a huge difference to Freddie and it has meant the family can now enjoy some quality time together.
She said: “We want to say a huge thank you to the club. The equipment is amazing for him. He comes home from school and lies on the cover until I take it off.
“We are absolutely over the moon because it’s Freddie’s new favourite thing.
“There aren’t many things we can do together, but this is something the whole family can enjoy together.
“Freddie just loves water. It’s made life a lot easier.”
Freddie’s older brother Joseph, aged 12, used to play for the rugby club and a number of Justine’s close friends are involved with the team.
They have been raising money for Freddie for two years and have also made him an honorary member of the under 10s team.
Thanks to their fundraising efforts, the club has paid for Freddie’s family to go on holiday and members also bought him an epilepsy monitor so his parents can see him when he is in other parts of the house.
This year they held bucket collections and organised a fun day to raise money for a hot tub and swing for Freddie.
Justine said: “The players and coaches are overwhelmingly generous. We are so grateful to them. They were very thoughtful to include him.”