Family of charity’s first beneficiary back #Team20
The family of a 20-year-old man from Talke, in Staffordshire, are urging the public to get behind a charity’s 20th anniversary campaign after it supported their son when he was just nine months old.
Caudwell Children, the national charity that provides practical and emotional support to disabled children and their families, recently launched its #Team20 campaign to celebrate its foundation in 2000.
Throughout 2020 Caudwell Children is encouraging people to engage with the charity in a number of ways, like taking part in a fundraising event, volunteering for the charity, or raising awareness of its services, in order to join their #Team20.
Lloyd Humphries was born with Canavan disease, a degenerative condition that has left him a quadriplegic, blind, non-verbal and an epileptic.
Lloyd, who was the charity’s first ever beneficiary, also has a number of other complex medical conditions and doctors gave him a life expectancy of just 3-5 years.
“We’re so lucky to still have Lloyd as his early years were extremely difficult,” said his mother, Louise, aged 42. “Luckily he was the first British child to undergo a pioneering new gene therapy aimed at improving the quality of life of those with the disease.
“The treatment, delivered in the US, slowed down the damage to the brain and Lloyd became a lot more alert and responsive and subsequent studies have shown that the treatment increases life expectancy.
“However, the therapy was extremely expensive and we were so grateful when Caudwell Children, agreed to help fund some of the costs.
“Lloyd will be celebrating his 21st birthday in a couple of months and Caudwell Children has played an important part in getting him to this milestone, which is amazing!”
Louise, says that despite her son’s health issues he has a strong will and good constitution. “It’s extremely difficult as he needs ventilation overnight, and to be honest we don’t know what the future holds, but every day is a bonus,” she explained. “He gets lots of infections but he keeps fighting them, it’s just part and parcel of his condition and who he is as a person.”
Louise says that Lloyd, a former pupil at Merryfields School in Wolstanton, is a happy young man who enjoys going out with his family and carers. She said: “He loves music therapy, going to Newfriars College in Bucknall, working on his communication skills and accessing the community.
“But now he spends a lot more time in his wheelchair and where once he used to be able to shout and make sounds to make himself known, he now has to communicate by blinking to indicate ‘Yes’ or ‘No’.
“But despite his degenerative condition we’ll continue to do whatever we can do to stimulate him and keep him active.”
Louise says that Caudwell Children’s support benefited the whole family. As she explained: “Lloyd has a sister Lacey, aged 17, and a 10-year-old brother Charlie, and they’ve had the time to get to know their older brother.
“They’ve developed a beautiful relationship with Lloyd and he astounds them every day with his stamina and constitution.
“And without a shadow of doubt the support that Caudwell Children gave helped to get the family to where we are now, so we’ll be eternally grateful.”
Louise is encouraging the public to get behind Caudwell Children’s #Team20 campaign. As she concluded: “I’d urge people to get involved in any way as even a small amount will contribute in helping families out there who need support.
“It’s incredible how much it costs to raise a disabled child and people need to be aware how difficult it is for charities to raise the funds that they need to help families like mine.”
Trudi Beswick, CEO of Caudwell Children, is delighted by the family’s appeal. She said: “It only seems like yesterday when we agreed to fund Lloyd as our first ever beneficiary.
“He’s defied the odds over the last 20 years and it’s wonderful to see how he’s developed his relationship with his brother and sister.
“With the public’s help we can support even more disabled children and young people like Lloyd.
“You can get sponsored to run 20 miles, bake 20 cakes to sell at work, volunteer for us for 20 hours, or you could do a sponsored 20-minute static cycle ride to join our #Team20.
“Whatever it takes I want people to get involved in this campaign in what is a very special year for the charity.”
For more information on how you can get involved in Caudwell Children’s #Team20 campaign visit. the web page here.