‘A little bit of fun goes a long way'

Watch the amazing video at the bottom of the page! When Dylan was born to INTO employee David Rafferty and his…

INTO Volunteers are kings of the (sand) castle!

05 Sep 2019

Watch the amazing video at the bottom of the page!

When Dylan was born to INTO employee David Rafferty and his wife Harriet in August 2012, their lives changed forever. “We had met doing expeditions, and were really excited about becoming parents,” says David.

All went well for the first three months, but then the couple realised that their son wasn’t tracking movement with his eyes. A full-on series of tests and hospital visits followed and, finally, nine months later, they found out that Dylan has 4Q Deletion Syndrome – a very rare genetic condition.

“During that time, we had experts in every field tell us that they had no idea what was wrong with Dylan. It got to a point where we were really, just, alone. Looking back, it was probably one of the most worrying times of my life,” says David.

Although having a definite diagnosis brought some sense of relief, Dylan’s disorder continues to affect their family, including Dylan’s four-year-old sister Alexa, as it has a huge impact on his communication skills, mobility, muscle tone, growth and cognitive development. Planning for the future is also impossible, says David, as how Dylan’s condition will affect him as he grows up is anyone’s guess.

“The problem we have now is that a lot of the time we have to put an emphasis on how Dylan wants things, and we miss out on Alexa’s feelings,” says David.

He is eternally grateful to the Sandcastle Trust for helping them out at a time when they really needed it. The charity was set up to provide families affected by rare genetic disorders with some room to breathe by helping to pay for what it calls ‘sandcastle memories.’

 “When we found out about the Sandcastle Trust in 2017, I had just changed career paths as I really needed to be at home more to support my family and Dylan. We found that we were starting to break up as a family.

“We were really tight financially – we couldn’t afford a holiday, and Sandcastle Trust made going away for a week incredibly simple for us. It was a real opportunity for us just to forget about everything and came at a time when we really needed it. The condition was controlling our family… we needed to remember how good it is to be a family and to relearn how to live in the moment and reunite,” he says.

In addition to helping fund holidays, the Sandcastle Trust helps by providing day trips or annual attraction passes for families. The charity was founded by David Singleton, a father of two who has Adrenomyeloneuropathy, and his wife Danielle several years ago.

“Setting up the Sandcastle Trust helped us because we were able to turn our negative experience into a positive by helping other families in a similar situation, and allowing them to create their own memories,” says David (Singleton).  

‘A little bit of fun goes a long way,’ reads the charity website. Indeed, their Sandcastle-funded holiday helped to break the negative ‘spell’ cast by Dylan’s condition over the Raffertys – and the family has since been on several more breaks at Center Parcs, which is ideal as it is a car-free, safe environment where Dylan can indulge in a passion he shares with most seven-year-olds – running around.

Although the Raffertys are now in a position to fund their own holidays, David will never forget the help he received from the charity when his family was in crisis. He therefore decided to use his two INTO volunteering days to produce a video to highlight their work.

“In my role as Lead Instructional Designer on INTO’s Learning Solutions Team, I am able to make films and edit them, but I soon realised that this was too big a job for me to do on my own. So I wrote to INTO’s video production team asking for help editing and filming it and Video Producers Chris Goulden and Valentin Vaklinov said they would be glad to help.

“The project took all three of us our two days, plus a bit longer. We filmed Danielle and Dave in their Croydon home and my family’s section in a single day. We were originally going to create one video of around 10 minutes, but decided that this was too long for social media. So, we broke the footage into two five-minute-long videos – one centring round my family as a ‘case study’ and the other based on the charity, its work and the other families they have helped.  

“Being able to work with other people in the company and use their skills was a great experience. Sometimes there is the notion that when you volunteer you’ve got to do some sort of manual handling like removing plants and that kind of thing. I wanted to break that stigma and say, well, we all have a really good professional skillset - so let’s use it to for the general good,” says David.

You can view the Rafferty family case study video below. And if you are an INTO employee, please visit the INTO Giving website for details of how to apply for, and ways to use your two annual paid volunteering days.

 


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