Over the Wall

“They brought us back together as a family”

Matt and Katherine Courtier, from Southend-on-Sea, told us how Over The Wall helped their family after their son was diagnosed with Ulcerative Colitis.

Family dynamics and routines change when a child becomes ill, often causing confusion and anxiety for the other siblings. Some children feel guilty for being healthy and able to enjoy activities that their sick sibling is unable to; others may feel anger that their parents have to give more time to the sick sibling and are fearful generally of an uncertain future. We spoke with Matt and Katherine Courtier, parents of Finley 16, Fred 13, Charlotte 11 and Bella who’s seven. “It was almost three years ago now,” Katherine remembers. “We noticed Finley had become withdrawn and quiet, had unusual eating habits, went to the toilet a lot and wanted more privacy. At first we put this down to him being 13 and growing up. But then he began to lose weight, was tired and listless and seemed to have cold after cold. We went on holiday to Cornwall and were shocked to see how emaciated he looked in his swimwear. We planned to take him to the doctors upon our return but no sooner had we got home, he collapsed and was rushed to hospital. It was only then that Finley admitted how ill and exhausted he’d been feeling.”

Tests revealed Finely was very anaemic and was suffering from Ulcerative Colitis – a form of inflammatory bowel disease (IBD) that causes inflammation of the intestines, similar to Crohn’s disease. Finley was transferred to Addenbrooke Hospital in Cambridge and over the next eighteen months he was in and out of hospital with flare ups.

“It took a while for them to get his medication right,” says Katherine. “He was given numerous drugs and steroids to stabilise his condition. An added complication was that he was acutely phobic of needles. In the beginning it was awful, he would literally run out of the hospital if he needed to be cannulated but it was necessary as he needed infusions every ten weeks. Thankfully, with the help of specialist nurse, Mary Brennan, he was able to overcome his phobia.”

The situation took its toll on the family back home though. With Katherine accompanying Finely on his numerous visits to hospital, Matt was left at home to care for their younger children. “At the same time, Fred was sitting his 11+ exam – he didn’t pass and I think it was because I wasn’t around very much,” says Katherine. “I hardly saw Charlotte and Bella too – it took its toll on us all.”

Then a nurse at the hospital told Katherine about Over the Wall and its therapeutic recreation camps for siblings of children facing serious health challenges. She got in touch and, in April 2017, Fred and Charlotte were invited to go on a four-night residential Sibling Camp in Dorset. “Fred was a bit hesitant but after meeting young people in a similar situation he was reassured. Charlotte embraced it enthusiastically from the word go.

They weren’t allowed phones or gadgets, which encouraged them to socialise properly. They took part in activities including arts and crafts, swimming, team building, climbing and singing. Fred and Charlotte were given boxes to bring home, full of memorable things they’d done and positive comments about them from the leaders. And while they were away, Matt and I spent quality time with Finley and Bella, we had a fantastic day out at Thorpe Park, with only two children we could give them all the attention they needed, which was a great tonic for us all.”

In August 2018, Over the Wall invited the family to a Crohn’s and Colitis family camp at their country location in Blindfold, Dorset.

Says Matt, “Now it was my turn to feel hesitant, I’m a financial advisor and used to speaking to large groups of people but the thought of going to camp took me out of my comfort zone. But within an hour of being there I began to feel at ease. It was so well organised – two young helpers were assigned to us as a family for the whole weekend, not in a breathing down your neck way, but supporting us when we needed it. We played board games as a family – at home, board games can often end in tears, with the helpers being present, everything went smoothly and it was fun!”

“It was interesting to hear from other parents how their children coped and we got the feeling that we haven’t had to struggle as much emotionally as Finley just gets on with things,” adds Katherine. “And there was lots of focus on the family as a unit, a team – this definitely helped Finley understand we are in this together. We are a close-knit family unit, and ready to support him in any way we can, whenever he needs us.”

A few months after returning home, they were told Finley was in clinical remission and finally on an even keel health-wise. “It was such a relief,” says Katherine. “We’re hoping the worst of it is behind us. Over the Wall has helped us through such a difficult time. They helped us reconnect as a family, put us in contact with people we can relate to and showed us we can have fun again.”

In fact, the family were so appreciative of everything Over The Wall has done for them that Matt approached his employer who offered a significant donation through St James’s Place Charitable Foundation, which has enabled them to employ a trained nurse for three years.

And this summer, Katherine is planning to volunteer as an Over the Wall health provider.

“It will be my pleasure to do something for them in return,” she says.

Helping families whose child has a serious illness

TOTAL RAISED: £22,606

Funds raised in The Candis Big Give will be used to run three sibling camps across the UK. These are run specifically to help siblings of children with serious or life-limiting illness to build their confidence and self-esteem, increase resilience and have fun enjoying new challenges and activities. Siblings also get a break from the pressures and constraints of life at home and have the opportunity to meet other children who face the same challenges.

otw.org.uk

In the UK, it is estimated that 50,000 children and young people live with a serious illness affecting their quality of life which can become a barrier for future growth and development.

Residential camps are free and are designed to be fun, memorable and empower young people in a physically and mentally safe environment.

Over The Wall was founded in 1999, inspired by camps run in the US – the brainchild of the late actor and philanthropist, Paul Newman.

 

Make a Difference

Total to Date:

 

DREAMFLIGHT

What it does: Raise money to take seriously ill or disabled children to Orlando, Florida.

 

Candis Big Give Project: To send 20 children on an all-expenses-paid ten-day trip.

 

Location: National

 

Total raised: £69,819

 

SEBASTIAN’S ACTION TRUST

What it does:  Offer support and respite holidays to seriously ill children and their families.

 

Candis Big Give Project: To provide families of seriously ill children with outreach support in the community, hospital, home and at its new Family Outreach and Respite Centre.

 

Location: Berkshire

 

Total raised: £27,000

 

JULIA’S HOUSE

What it does: Provide respite care to children with life-limiting conditions both in their homes and at the hospice.

 

Candis Big Give Project: Money raised will pay for two specialist members of the play team as well as toys and sensory equipment.

 

Location: Dorset and Wiltshire

 

Total raised: £41,493

 

RETT UK

What it does: Support families with children with Rett syndrome, a sever genetic neurological disorder.

 

Candis Big Give Project: To recruit, train and employ six regional Communications Champions who will support parents and carers of children with Rett syndrome.

 

Location: National

 

Total raised: £13,379

 

ACTION FOR STAMMERING CHILDREN

What it does: Offers specialist help to transform the lives of young people who stammer and their families.

 

Candis Big Give Project: To provide over 600 phone calls by speech and language therapists to young people with stammers, as well as offering guidance and support.

 

Location: National

 

Total raised: £21,151

 

THE CHILDREN’S TRUST

What it does: Deliver rehabilitation, education and community services to children with brain injury

 

Candis Big Give Project: To provide specialist play activities to children with brain injuries and neurodisability who are being cared for at the charity’s site in Surrey

 

Location: Surrey

 

Total raised: £51,355

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