The Children’s Trust
Mel Briston, 47, from Peterborough, explains how The Children’s Trust helps families affected by brain injury
Mel Briston’s son Ryley, now 18, has always been very motivated. “He dreams of a career in sport, which has always been a huge part of his life,” she says. “He did gymnastics competitively from the age of five and is also a promising sprinter, winning the county championships for 100m. He is strong-willed and determined and has every chance of achieving his goals – however, he knows he has to work harder than most.”
Ryley had always been fit and healthy, until in May 2016, when he was 14, he collapsed at home after playing football. “He was taking a shower when his brother, Theo, heard him shouting urgently for their dad. His speech was becoming slurred, and within seconds he had collapsed and was vomiting violently.”
Mel, 47, was called and rushed home. “The paramedics were trying to get him down the stairs, but his body was convulsing violently and he slid out of the stretcher and ended up in a heap. We had no idea what was happening or why.”
Ryley was blue-lighted to Peterborough hospital, where he was given a CT scan, which revealed he had had a massive bleed in his brain. He was then transferred to Addenbrooke’s Hospital in Cambridge, where he was given emergency surgery to stem the bleeding, and surgeons removed a large part of his skull to allow his brain to swell. He was then put into an induced coma and transferred to PICU.
The next morning, the family were told that Ryley had had a brain haemorrhage
caused by an arteriovenous malformation (AVM) – a rare and asymptomatic condition he’d had since birth, where a tangle of blood vessels in the brain bypasses normal brain tissue and directly diverts blood from the arteries to the veins. “We were told Ryley’s brain had permanent damage due to it being starved of oxygen for so long, but we had no idea how this would present itself in the future.”
Ryley remained in hospital as he started on the long road to recovery. “He had to have a tracheotomy, as the doctors were worried he wouldn’t be able to breathe independently. Pysiotherapists would come in daily to put him on a tilt table and hoist him into a huge supportive chair, although he was completely unresponsive at that point.”
Slowly, Ryley began to become more aware. “He was able to focus on me again, then one day he pursed his lips to kiss me. It was such an emotional moment. After two months, I encouraged him to communicate using his eyebrows (up for yes, down for no) and was able to ascertain he knew who he was. I was overjoyed – my little boy was still in there!”
“We were told Riley’s brain had permanent damage due to it being starved of oxygen for so long, but we had no idea what this could mean in the future”
Following surgery in October to remove the AVM and fit a titanium plate in his skull, Ryley was moved to The Children’s Trust’s national specialist centre in Tadworth in Surrey for brain injury rehabilitation. “The staff were amazing. I could stay in the parents’ accommodation on-site, and they became our family for the next four months.”
Ryley began an intensive timetable of physiotherapy, speech and language therapy, occupational therapy, music therapy, play therapy and school lessons. “He was given an electronic communication aid, and his humour shone through with lots of cheeky phrases coming out. He was also able to build up strength through standing and work on walking using different frames. He was given adapted utensils and worked on his swallowing until he was finally eating a diet of small chopped-up food and feeding himself with a spoon.”
Music helped Ryley through his rehabilitation. “When music therapy was first mentioned to me, I couldn’t understand how it would help because Ryley couldn’t speak at all or use his hands effectively, but we were willing to give anything a try. “It was really fascinating to watch Ryley develop breath control and volume of sounds to a rhythm, and he displayed significant improvement in each session. He was particularly motivated by humour, and they used music and rhythm to create silly songs and raps to improve the accuracy and timing of his speech. When Theo and Phil, his dad, were visiting, they could join in too and the sessions were full of laughter. Ryley slowly became able to produce a wide range of words and phrases which were intelligible to those around him.”
“Riley was particularly motivated by humour and they used music and rhythm to create silly songs and raps to improve his speech, so the sessions were always full of laughter”
In the last six months, Ryley has stopped using his electronic communication device to speak. “He still uses the techniques he learnt in music therapy to ensure that his voice is clear and understood. Thanks to regular physio sessions, his upper body dystonia has also dampened down significantly to the point that he can now walk with close supervision.
“Ryley is now in a new school and aiming to do his GCSE maths in 2020, and his goal is to get back on the athletics track and be a Paralympian. He practises walking and jogging on the track most weeks. It’s amazing to see how far he has come and I don’t think any of this would have been possible without the hard work and support of The Children’s Trust. It will always have a special place in our hearts.”
TOTAL RAISED: £80,848
The Children’s Trust delivers rehabilitation, education and community services to children with a brain injury. It will use the money raised in The Candis Big Give to offer specialist play activities and music therapy to nearly 200 children with a brain injury at its specialist centre in Tadworth in Surrey. These activities will support the children with their recovery by helping them to develop and relearn physical, cognitive, social and emotional skills, while also giving them the opportunity to express their feelings, reconnect with the world and have fun during a difficult time. Call 01737 365 000 or visit thechildrenstrust.org.uk for more information.
Donations to date
We never forget it’s YOUR subscriptions that enable Candis Club to give huge amounts to charities. Our running total shows how much
£31,620,386 to the Cancer and Polio Research Fund (1962 to 2002)
£4,429,597 to the National Asthma Campaign (1990 to 2002)
£5,500,979 to Marie Curie (1998 to 2012)
£3,304,767 to Macmillan Cancer Support (1993 to 2013)
£3,309,982 to Bliss, the special care baby charity (1990 to 2009)
£2,190,977 to Liverpool University’s Cancer Tissue Bank Research Centre (1989 to 1993)
£1,549,998 to the British Heart Foundation (2002 to 2008)
£914,053 to local groups via the Charities Aid Foundation (CAF) (1990 to 2009)
£220,000 to ICAN (1989)
£246,876 to Tommy’s, the baby charity (2006 to 2009)
£303,774 to Children’s Hospices UK (2008 to 2010)
£2,500,000 to charities in The Candis Big Give
TOTAL TO DATE
In 2020, Candis Club will donate at least £250,000 from members’ magazine subscription revenue to health charities taking part in The Candis Big Give. Any additional funds will go to charities at the discretion of the General Committee of Candis Club
Make a difference
We’ve highlighted some of the charities taking part in The Candis Big Give. For a full list, and details of the life-changing projects they’re raising money for, visit candis.co.uk/charity
Action for ME
What it does: Raises awareness of ME and ensures those affected by it get the care and support they need.
Candis Big Give project: Money raised will support people affected by ME and research into the condition.
Total raised: £129,736
What it does: Partners people with disabilities with assistance dogs.
Candis Big Give project: To provide disabled adults with assistance dogs.
Total raised: £102,668
What it does: Supports families affected by childhood cancer.
Candis Big Give project: The money will go towards an art project involving more than 300 children.
Total raised: £8,995
What it does:
with cancer and their families and friends.
Candis Big Give project: To continue to offer a wide range of services to those affected by cancer.
Total raised: £22,532
Rays of Sunshine Children’s Charity
What it does: Supports seriously ill children and their families.
Candis Big Give project: To create precious memories at Christmas.
Total raised: £11,945
What it does: Gives families with ill children access to a holiday home.
Candis Big Give project: To give ill children and their families a holiday.
Total raised: £4,768
Sebastian’s Action Trust
What it does: Offers support and holidays to seriously ill children.
Candis Big Give project: To provide families of ill children with support.
Location: Berkshire and Hampshire
Total raised: £25,677
How Buying a Subscription Helps – In 2020, Candis Club will donate at least £250,000 from members’ magazine subscription revenue to health charities taking part in The Candis Big Give.
Any additional funds will go tocharities at the discretion of the General Committee of Candis Club.