Families and supporters gathered on Monday at Great Harwood Boxing and Fitness for a special fundraising evening in support of "happy, bubbly, and loving" eight-year-old Olly Barker.
By the end of the evening on February 9, they had raised £503 to help Olly access life-changing treatment in Mexico.
The gym, run by Asad Riaz and his family since 2019, has become a welcoming place for the community.
Alongside offering the community a space to exercise their physical health, they also provide free monthly mental-health support sessions for anyone who needs them.
Asad organised the fundraiser himself, with help from his four brothers and three sisters, who cooked and entertained guests all evening.
The event had free boxing and fitness sessions, homemade Pakistani food prepared by the Riaz family, and various other foods and refreshments.
"I know Olly from when his brothers trained at the gym," Asad said.
"His mum, Leanne, is the hardest worker and does a lot to support him to have the best chance at life.
"He is the happiest, bubbliest, and most loving child, even with his condition.
"I wanted to host this charity event to try and raise money, anything that can help him towards his goal of reaching £40,000, so he can travel to get treatment for his condition.
He deserves this chance, and I want to raise awareness for SYNGAP 1."
For Olly’s mum, Leanne Barker, seeing the community come together meant more than the money raised.
She said: “It’s heartwarming to see everyone come together and support my son.”
She explained that Olly finds new and busy places stressful, but he has grown used to Asad’s gym after visiting a few times.
Asad’s sister, Sabiya, said: “Olly, when he meets new people, he’s quite discombobulated and nervous. But as soon as he saw Asad, he waved and was at ease.”
Leanne said that even though Olly is nonverbal, he still finds his own ways to communicate.
She said he blew a kiss as they were leaving and was upset when he realised Asad was leaving.
Olly has SYNGAP1, a rare genetic condition that affects his brain development and daily life.
READ MORE: Family aiming to take 8-year-old Olly to Mexico for 'potentially life changing' trial
He has epilepsy, autism, a learning disability, delayed myelination, cilia dystrophy, low muscle tone, hypermobility, and dystonia.
The condition is so rare that there are no specialists in the UK who can offer the treatment he needs. Therefore, the family felt they had no choice but to look abroad.
They have been approved for a clinical trial at Neurocytonix in Monterrey, Mexico.
The treatment runs for 28 days, but Olly must have MRI scans, EEG tests and blood tests two days before and two days after, meaning the family will need to stay for 32 days.
Leanne said: “We are doing everything we can to give Olly a chance.”
She said that seeing another child with the same condition benefit from the treatment made them feel they had to try.
“This treatment could help Olly become more independent and give him a better quality of life.”
Another family whose child has SYNGAP1 travelled to Mexico last March have now been funded to return again to see whether the treatment can be given more than once.
Leanne said: “If it works, that shows massively how many people it can help. It’s a shame we have to go all the way to Mexico.”
She added there is no dedicated charity for SYNGAP1 and nothing specialised to help families like theirs. All the money raised goes straight back into research.
The machine used in the treatment is not FDA-approved, which is another reason why the family must travel so far for Olly to receive it.
Councillor Sohail Asghar attended the fundraiser to show his support.
"This was a brilliant event organised by Asad," he said.
"He's a very humble person, and he's doing this from his heart. It's a much-needed cause, and we'll continue to support them however we can."
Leanne and her partner, Neil, are both self-employed so they can attend the many hospital appointments Olly needs.
They have been unable to live in their own home for almost three years because of adaptations needed for Olly’s care.
Olly dreams of being more like his older brothers, and Leanne said he works incredibly hard every day despite his challenges.
This event is one of many fundraising efforts taking place in the coming weeks.
Accrington Stanley will hold a donation bucket collection on February 21.
The pool where Olly swims is also planning a swimathon.
Supporters are preparing a 27-mile walk at the end of March.
Another family fun day is being arranged by Leanne, and Asad's family have already said they will run another fundraiser soon.
Some supporters are even planning to cycle the distance from Lancashire to Mexico as a symbolic show of support.
A parent from White Ash School, where Olly is in Year 4, is completing a 5k walk throughout April in small sections and raising sponsorship to send directly to Olly’s family.
Donations to support Olly’s treatment can be made at the family’s fundraising page on GoFundMe.
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