Learning to trust – a parent’s story

Written by Rachel Burkinshaw, OTW camper parent and blogger at 7yearstodiagnosis

It’s hard to believe that 4 years ago we knew absolutely nothing about Over The Wall and now, here we are, a family working hard to be the very best advocates for this charity that we possibly can be.

It sounds odd, but I think we were fortunate that our introduction didn’t come through our hospital or medical team with limited first-hand experience. Rather it was thanks to a mum I’d met through a support group, who had sent both her chronically ill children to camp in 2015 and couldn’t recommend it enough. The reassurance that someone I knew and respected was prepared to trust OTW with her children inspired huge confidence and made me determined to find out whether M might similarly qualify for a place.

The OTW siblings camps were a great first step for us, not least because we were able to test the waters of OTW’s ability to cater for G’s gluten – and dairy-free diet before unleashing the much bigger challenge of M and his 5 safe foods on them at the Health Challenges camp. Having been away at school camp before, I was certain that G wouldn’t miss us too much, but we all felt some butterflies as we met the OTW minibus and a small handful of her fellow campers before waving G off on her adventure.

“The weeks leading up to that first Health Challenges camp
were emotional ones for us.”

The confirmation of a camp place for M was, in comparison, a major event in our household and required a huge leap of faith from us all. We were incredibly nervous as due to his extremely restricted diet, complex bowel problems and challenging sleep issues, M had never been able to go away from home without being with family. Not only had he never attended a sleepover, nor had we ever entertained having his friends over to stay with us because of the embarrassment factor that he was acutely self-conscious about at that time.

What ultimately gave me the impetus to actually press enter on that application form was the knowledge that going to OTW would see him having those same opportunities to enjoy activities as G and his friends had had, in an environment that we truly believed would be safe for him because of all I had read about the Beach Patrol team – the dedicated medical volunteers – and 1-to-1 support provided for all children attending camp.

Likewise, understanding that Paul Newman’s vision for starting the SeriousFun camps was to make sure that every child, regardless of their health needs, would have the opportunity to attend camp and enjoy a touch of “normal” in their otherwise complicated lives and that that remained at the very heart of what OTW is trying to provide in the UK, convinced me that this was a calculated risk that I very much wanted to take for M.

The weeks leading up to that first Health Challenges camp were emotional ones for us.

On the one hand, I was confident that they had definitely got a handle on the challenge of feeding a child who, at that time, could only eat 5 safe foods and that their talented camp chefs were ready to tackle this challenge head-on. The incredible draft menu we received as well as the regular contact to see if any changes or additions to his diet had happened since our original application just underlined that fact.

“What made the difference was that the OTW team were
there whenever we needed them.”

Yet, on the other hand, M had badly broken his left leg during the Easter holidays and his recovery had taken a lot longer than the medics expected and had proved a traumatic and testing time for us all. Whilst I knew in my head that his weakened leg would not be a barrier to M attending camp, in my heart I worried that he would not benefit as much from camp as we had been hoping he would and that he would end up disappointed by the whole experience.

What made the difference was that the OTW team were there whenever we needed them.

The e-mails and phone-calls exchanged as we prepared for camp gave me complete confidence that they were approaching looking after M with the same level of care that I did every day and at no point was I made to feel that I couldn’t get in touch if I had any concerns, either in the lead-up to, or whilst G and M were away at, camp.

With two Siblings and two Health Challenges camps under our belts, I not only have the confidence to apply, yet again, for both G and M to attend if possible in 2019, but to recommend OTW to any parents considering it. It is understandably difficult to trust strangers with the care of the most precious things in your life, but there is much truth in the saying that “…there are no strangers here; only friends you haven’t met yet…” – and in the case of OTW, that is unquestionably true.

Share your story with us at media@otw.org.uk