Chailey Heritage Foundation
Sharon Clark, 50, from East Sussex, explains how Chailey Heritage Foundation has supported her and her son for the last seven years.
Sharon Clark’s son, Fenton, now 12, was just one day old when she was told he was very poorly. “He had been taken for an examination because he was grunting, but within a few hours he was intubated. An MRI revealed he’d had a bilateral perinatal stroke, though nobody could tell us why. He was wired up to monitors, with cables coming off him from below his neck to his toes. I sat and cuddled him and vowed to do everything in my power to give him the best quality of life he could have, whatever that might look like.”
After several weeks, Sharon was able to take her son home. “We had regular hospital appointments, as Fenton was having frequent seizures despite his medication. As he got older, we also realised he wasn’t developing as expected, as he didn’t crawl or try to stand up. “By the time he was around eight months old, terms such as cerebral palsy and epilepsy had started to creep into the doctors’ conversations. We became aware he had quadriplegic cerebral palsy – which is a lifelong condition affecting movement of all four limbs, caused by a problem with the brain – as well as severe refractory (or drug-resistant) epilepsy, and some hearing and visual impairment. He would also be non-verbal.”
Fenton requires 24-hour care as he is unable to do anything for himself. “He was given a wheelchair early on as he couldn’t sit or stand unaided. He was also having multiple seizures every day as, despite being put on many types of medication over the years and even with having a VNS (vagus nerve stimulator) fitted – which helps to prevent seizures by sending electrical pulses to the brain via the vagus nerve – he is prone to so many different types of seizures it is not possible to control them all.”
The fact there is an on-site medical team is really important, as I know that if anything serious happens, Fenton will be attended to quickly by the right people
Fenton was four, Sharon applied for a place for him at Chailey Heritage School – a school for young people with high health needs and complex disabilities, which someone at his nursery had told her about. “We looked around lots of specialist primary schools first, but were told they couldn’t meet his medical needs because his epilepsy was so unstable. However, from the moment we entered Chailey Heritage School, we knew it was the school for Fenton.
“The fact that it has an on-site medical team was really important. It also has direct links with hospitals, so we knew that if anything serious happened, Fenton would be attended to quickly by the right people.” Fenton started school in October 2012, a month after turning five, and he is still a pupil there today. “It was a fantastic decision, which has really benefited us. I can drop him off and walk away knowing he is in good hands. Everything is adapted and geared to our children and the staff are so responsive. There is also a team of on-site engineers, so any problem with the facilities can be solved right away. Nothing is too much trouble.
“It has also been invaluable to be around other parents in a similar position, as well as staff who understand what we are going through. We can swap tips on places for days out or the best equipment to buy, and there is always someone there to give you a hug or buy you a cup of tea if you’re having a tough day, as everyone completely gets it. The charity also puts on workshops and drop-in clinics around issues raised by the parents, for instance on how to do resuscitation for someone who is in a wheelchair, or preventing and dealing with pressure sores. As a parent you feel very supported.”
Every pupil also has their own individual curriculum, to meet their unique needs. “For Fenton, this physical programme really does work for him. For instance, he will go in his walker and in a sling that’s suspended from a hoist in the classroom, and might be asked to find and walk towards his teacher.
“He also goes swimming, takes part in adapted sports such as wheelchair football and cricket, plays computer games using Eyegaze technology, rides his adapted tricycle down to the on-site farm, and does rebound therapy on the trampolines. The staff will talk to him the whole time while teaching him about the animals on the farm, for example, or encourage him to interact with them through smiles or squeals or blinking before he is allowed to bounce, so he is encouraged to work without knowing he’s doing it. He’s a really happy boy who thrives in this environment”
Chailey Heritage Foundation raised money in The Candis Big Give to buy an Innowalk, a specialist piece of equipment that helps people with severe disabilities to move their arms and legs in both sitting and standing positions. “Fenton used one of these several years ago when another school had one on trial, and he absolutely loved it. Not only is it really fun, it’s also brilliant for improving bone density, the circulation, lungs, heart and everything else. A side effect of cerebral palsy can be hip dislocation – and Fenton has had bilateral hip surgery done in the past to fix this – but the Innowalk can reduce the risk of this. Fenton’s sleep quality also improved during the weeks he was using it. When you’re more physical, everything is moving around, so the body just works better.
“The Innowalk can be easily adapted to every child, as everything is movable, and can be used with iPads or screens so the children can feel like they’re riding along a road on a BMX. It’s just an amazing piece of equipment and will be of great benefit to the pupils, adding even more value to an already incredible school.”
Exercise for young people with disabilities
TOTAL RAISED: £21,247
The money raised in The Candis Big Give will be used to purchase an Innowalk, a piece of equipment that helps people with severe disabilities to move their arms and legs in both sitting and standing positions. The motor-operated motion therapy device would enable the young people with complex physical disabilities and health needs supported by the charity to exercise out of their wheelchairs, helping to improve their muscle strength, bone density and general well-being. Call 01825 724 444 or visit chf.org.uk
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.