Family set up fundraisers for "loving" three-year-old Sheffield boy with rare genetic condition
“We just want to try and do as much as we can and to make a difference”
A Sheffield family have launched two fundraisers to help raise awareness about their son’s rare genetic condition.
The family, from High Green, aim to raise £70,000 to fund research into the condition, which will be carried out by experts at the University of Sheffield.
Archer Hussain, who is only three-years-old, has CNOT3 - a condition that impacts his mobility and ability to speak.
Archer’s dad, Toby Hussain, 31, said: “The goal is to start an actual, first research project just to learn more about the condition and get more answers of what to expect moving forward as he gets older.
“At the minute, there’s limited research and we just have to take it day by day, week by week, and see how we’re developing.”
Toby revealed that currently, there are only around 50 cases of CNOT3 around the world, which is why him and his wife, Ellis Howe, 30, have launched two fundraisers throughout October.
On Saturday, October 17, the family will be taking part in a walk from the North of Sheffield, to the South. Starting in High Green, all the way down to Greenhill, ending their walk with tea and coffee provided by the White Hart pub.
Toby mentioned how this fundraiser was Ellis’s idea, and that “mums from the school, some of our family and friends” will be joining them to take part in the walk.
As well as this, Toby decided to take on his own personal challenge, by holding a tarantula.
He will be accompanied by Archer’s “Nannan”, Maggie, and despite both being “terrified” of spiders, they will be holding a real life tarantula on Tuesday, October 27.
Toby said: “I don’t like house spiders and normal spiders, but I’m going to try and do it for him (Archer). We’ll have to film it, which I’m sure will be very embarrassing.”
The goal is for them to hold the spider for at least 30 seconds, because he said, “one minute seems reasonable, but God knows whether I’ll make it to that”.
The rarity of Archer’s condition, meant it took two years of research for medical experts to be able to diagnose him with CNOT3, after his first appointment in 2024.
Despite everything Archer has to face, he is described as a “happy three-year-old”, who is actually “more cuddly than most kids”.
Toby said: “He’s really funny and likes making people laugh.
“He has a really nice bond with his brother and they read books to each other and play together.”
Oakley, 6, is Archer’s older brother, and wants to get involved with fundraising as well. Toby shared how he’s expressed he wants to take part in the ‘Pretty Muddy’ - a 5k race through rolling parkland and open fields in Graves Park.
Toby shared how proud he is of Archer, as he has recently started nursery, where his teacher told them “he’s been practising getting up and down the step by himself for the first time”.
According to the University of Sheffield, this funding would support a research technician and laboratory costs for one year, allowing scientists to:
- Deepen understanding of how CNOT3-related disorder affects the body
- Investigate ways to restore CNOT3 protein levels
- Lay the foundations for future gene therapy research
The fundraiser reads: “Rare diseases often receive very little research funding simply because so few are affected.
“Children like Archer deserve the same hope as children with more common conditions. Every donation, no matter how small, helps move this research one step closer to becoming reality.”
Toby explained how the original fundraising page on GoFundMe, has now been moved to JustGiving, so that the funds can go directly to the University of Sheffield.
Currently, they have raised over £4,500 towards their goal of £70,000. You can donate to Archer’s fundraiser here.
Professor Meena Balasubramanian, Professor of Genomic Medicine at the University of Sheffield and Honorary Consultant Clinical Geneticist, at Sheffield Children's NHS Foundation Trust, said: “Meeting Archer and his parents in clinic underscored just how vital focused research is for rare conditions like CNOT3-related disorder. My group at the University of Sheffield are working hard to understand how variations in this gene affect health, track how the condition progresses, and pinpoint the exact cellular targets needed to develop gene-directed therapies.
“Research into rare conditions relies heavily on the dedication of families taking action. Supporting this fundraising directly powers the laboratory work and clinical studies that will bring real answers and targeted treatments for children like Archer.”