Over The Wall

“At camp, anything is possible”

Lynne Black, 49 from Clackmannanshire, tells how Over The Wall has helped her son Morgan, 13

Our son Morgan was like any other toddler; inquisitive, always exploring and bumping into things while still finding his feet. But one day, when he was 18 months old, he fell and cut his face and I couldn’t stop the bleeding. I took him straight to the doctors and they sent us to the local hospital’s A&E department but the wound on Morgan’s face continued to bleed. They referred us to the Royal Hospital for Sick Children in Yorkhill, Glasgow, where we were admitted overnight for monitoring and asked to come back for checks a week later. When we returned, we were told Morgan would have to have an operation to explore what was underneath the wound, as a “jelly-like” haematoma had formed. The wound had continued to bleed on and off for two weeks. When Morgan was admitted for his operation, we were sent for a blood test at the haematology and oncology department. We didn’t suspect haemophilia at this stage as the gene is carried in the X chromosome and I have two older sons who don’t have it, nor is there any family history of it. But the results of the blood tests proved that Morgan had haemophilia A with very low levels of clotting plasma. I felt terrible guilt as a mother that I, being a carrier, had passed this awful illness to my child and I isolated myself quite a bit, refusing to accept help from family and friends and wanting to control the care for his condition myself.

I wanted to wrap Morgan up in cotton wool and had visions of converting the back garden into a soft play area so that he wouldn’t get hurt. My husband, Kenny, was more realistic and made me see sense; he understood me wanting to protect our son but knew we had to try and let Morgan lead a normal life. At school, Morgan doesn’t want any fuss but we make sure that his teachers are aware of his condition. They know to contact us should Morgan have a bleed and either Kenny or I will leave work and take him immediately to the hospital. It’s all done discreetly – as an adolescent Morgan doesn’t want to be treated differently from his peers. We have a dose of factor VIII – the clotting factor Morgan needs – at home to take with us in case the hospital doesn’t have it to administer upon our arrival as we can’t leave anything to chance. On average, Morgan will have around seven bad bleeds a year, though as he’s got older and is more careful they’re less frequent.

I heard of Over The Wall about two years ago from someone I used to work with, who was a volunteer for the charity. We’re members of Haemophilia Scotland, so I contacted Over The Wall to come and give a presentation at one of our meetings. They told us about their “therapeutic recreation camps, designed to help children with life-limiting illnesses and their families and I instantly knew it was what we needed.

In the summer of 2015, myself, Kenny and Morgan spent the weekend at a family camp in Kielder Forest, Northumberland. On the first night we played board games together, a good way of breaking the ice. The following morning, the children went off to get to know each other and enjoy the activities including archery, zip wires, swimming, music and drama workshops. Meanwhile the adults joined team-building activities, all which were done informally and were great fun. In the afternoon you get together as families to do whatever you like and there’s even a little beauty spa to get your nails painted or have a hand massage. The families we met had children with various illnesses and one of the things we liked best was that nobody knew which children were affected (in families with siblings) or what the conditions were, everyone was treated the same. Unless the parents volunteered the information, the children at the camp were just like everyone else.

Professional care and support is on hand – a volunteer is allocated to each family for the duration of the camp and the medical hut is staffed by doctors and nurses who volunteer their time. It’s reassuring for parents and allows them to relax without the nagging worry that their child could take an unexpected turn. The camps are totally free – including all your food, drinks and snacks. It’s such a tonic to be in a fun and safe environment with lovely people without the worry and stresses of day-to-day life. For families with a child who has a severe disability, one parent may not be able to work and so money can be tight and they may not get a holiday, which means the siblings suffer too. Over The Wall now offers sibling camps – four-night residential camps for children aged eight to 17, who have a brother or sister receiving treatment or experiencing health challenges.

As for Morgan, he’s nearly 14 now. We had some fantastic news last year – his clotting levels have actually risen. It’s unusual for this to happen and doctors have said it’s extremely unlikely it will continue to rise, but we were delighted nonetheless.

This year Morgan is hoping to be accepted on to The Health Challenge Camp at Strathallan School in Scotland. Hopefully he’ll know a few kids and volunteers from the camps we’ve been to together. He’s looking forward to it and Kenny and I are excited for him. At the camp Morgan can be himself and not “the boy with haemophilia”. While he’s there his condition takes a back seat. It’s a special time and we are thankful to this wonderful charity for giving him this fantastic opportunity.

TOTAL RAISED: £20,018

THE FACTS

  • Over The Wall provides free therapeutic recreation camps for children and families affected by serious and life-limiting illnesses.
  • Campers can reach beyond the perceived limitations of their illness and rediscover a whole world of possibilities, helping to build their confidence, self-esteem, coping strategies and peer relationships.
  • Residential camps for siblings are offered to children and teenagers aged 8-17 who have a brother or sister who is currently receiving treatment or experiencing health challenges.
  • For information visit otw.org.uk.

BIG GIVE UPDATE

The moneyraised will help towards four family camps across the UK for families with children living with serious or life-limiting illness. The camps provide a much-needed respite from everyday pressures and frustrations, as well as helping families to increase their confidence and practical skills.

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