Snooker ace cued up to help family who need to raise £2k a month for Maya’s treatment
1,000KM RUN CHALLENGE FOR FRIENDS
A LEICESTER couple are having to constantly raise funds to pay for a treatment that will give their young child the best quality of life.
Sam Fairlie’s 10-year-old daughter, Maya Simons, has suffered from severe epileptic seizures for the past five years, due to a rare genetic alteration.
The condition has delayed Maya’s cognitive development and, at the age of six, she lost her ability to speak.
In 2018, Sam told the Mercury that a Dutch medicinal cannabis called Bedrocan is the only treatment that “doesn’t leave Maya with horrible sideeffects”.
Under current UK law, medical marijuana can be prescribed by the NHS. But Bedrocan, a full-extract oil, is not available through the health service for Maya’s condition.
That means Sam and Maya’s stepfather, Ian Hickling, can only access the drug privately, which would cost them £2,000 each month.
Unable to afford that, Sam has organised fund-raising events including an auction which sold-off a signed Anthony Joshua boxing glove and a guitar signed by rock band Kasabian.
“We’re lucky to have supportive friends and family but in the lockdown, it’s been a lot harder to fund-raise,” Sam said.
Now, with the help of Leicester snooker player Tom Ford, the couple have organised a 1,000km charity run to help raise the money they need.
The treatments that are available on the NHS for Maya’s condition mean the youngster has to spend weeks at a time in hospital receiving “loading” or large doses which leave her heavily sedated.
In addition, the youngster gradually builds resistance to these treatments, said Sam, which is why access to Bedrocan is so important to the family.
“In the two years she’s been taking the oil, she has only needed one visit to the hospital,” said Sam.
“She’s always going to have epilepsy, but the oil gives her the best quality of life she can get.”
Britain leaving the EU is presenting new challenges for the couple.
“We have six months’ worth of the oil, but Brexit has made it much harder to get,” said Ian.
The couple fear access will become more difficult, and the drug more expensive, due to post-Brexit administrative issues.
“We won’t be able to pay for this forever,” said Sam.
Throughout March, Ian and 10 of his friends, including snooker player Tom Ford, will will each run 100km, with little preparation in advance, while following Covid-19 rules.
Tom said: “It will be difficult, but it’s for a good cause. It’s a big strain on the family to spend £2,000 a month. It’s a lot of money.”
With assistance from World Snooker, the official organisation behind the professional game, Tom’s support has already helped raise money for the appeal.
It published a blog about Maya on its website to raise awareness of her plight, and a number of players have made donations. “We just want to do what we can to help,” said Tom.
Sam continues to campaign for access to Bedrocan through the NHS, but said the lack of progress had left her “going around in circles”.
To help Sam and Ian raise money towards Maya’s treatment, search for “Mayas 1000km run” at:
A HOUSE in a residential street is set to be turned into a children’s home despite some neighbours’ concerns it could lead to drug use and antisocial behaviour.
The city council has approved a proposal to turn a semi-detached property in Cantrell Road, Braunstone, Leicester, into a home for three vulnerable children.
However, the idea has proved unpopular with a number of people who live nearby, some of whom wrote letters of objection and raised a 60-name petition against the idea.
They said they were worried the home, which will be for youngsters aged between eight and 17, would be a magnet for poor behaviour and could lead to teenagers loitering on a nearby green.
However, the city council’s planning committee approved the scheme unanimously when it met this week.
Chairman of the committee Councillor Vijay Singh Riyait said the objections which had been raised by some were not necessarily issues which could justify turning down the proposal, which has been made by an organisation called Practical Care Solutions Children’s Services.
Planners said the fear of antisocial behaviour could be considered, but said they believed the impact of the change of use of the building would be “insignificant over and above a normal family house”.
They said the concerns about the potential behaviour of future residents were conjecture.
The company has told the council it wants to use the house to provide short, medium and long-term care for young people “who have experienced developmental difficulties or placement breakdowns, including family, foster and residential displacements”.
It said the children would live there as a family, with two members of staff looking after them.
The applicant stated: “We aim to refrain from supporting children in accommodation that appears institutionalised and instead provide accommodation that presents as homely and comfortable.”
It added: “We believe that children in care should be offered the same opportunities as other children and that we should work together with them and others involved in their care and welfare to diminish as far as possible the impact of their past experiences of rejection, abuse, neglect, exploitation and exclusion.
“Each child will have their own care plans, and all our looked-after children are expected to conform to our behaviour management policy which outlines the expectations from the staff team on how to manage any such behaviours and the training that will be in place to equip our staff team with the level of skills needed.”
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