Volunteering: an unforgettable experience!

volunteer at BarretstownSamantha Parker, Director of External Affairs and Rare Disease Patnerships at Orphan Europe, volunteered at Barretstown Therapeutic Recreation Programme and had "an unforgettable experience":

"Given the nature of rare diseases, pharmaceutical companies working in this area require and must be expected to have strong social values. In my company, Orphan Europe, the patient is always at the very centre of our planning, our thinking and our actions. To encourage this, we have staff volunteer programmes which allow staff to become involved with and understand more about the issues facing patients with rare diseases and to become more sensitive to their needs.

As part of this programme, I applied to be a family week-end volunteer at Barretstown in Ireland and was assigned to work with two families and also a specific group (the toddler group). It was an unforgettable experience. Whilst the first half day was dedicated to training, it provided an opportunity to understand how unique the place really is. These are children with life threatening illnesses.

At this centre, together with their families they can have the fun and games of any normal child, in a secure environment without pressure on the parents. In fact parents can leave their children and have a break from the constant pressure of nursing their child, possibly a very demanding and 25 hour a day task, knowing that they are in secure hands and a loving environment. You do things in Barretstown that you would never dream of doing elsewhere – from grooving for your food (dancing for your food) to having balloon filled water bombs dropped on your head. The high number of volunteers ensures that everybody is looked after and can have a fantastic time. The family’s lives were changed; after only 2 days it was like an enormous black cloud had been lifted away, things actually looked brighter. Perhaps selfishly, in the back of my mind, I was thinking about my own children and that I was having another week-end away from them.

When I saw them on Monday morning, I understood how much they stand to gain from the values that I can hopefully pass on to them. From my company’s perspective, the volunteering experience helps us understand the responsibility that we have towards our patients, providing life-saving or life-enhancing therapies and it is an example of the benefits, if not the necessity, to work as a team. While it is very difficult to express the Barretstown experience on paper, I hope this note will encourage other volunteers to give up a few days of their life to gain a better understanding of the patients we are helping and the impact of the work we are doing."

Samantha Parker, Director of External Affairs and Rare Disease Partnerships at Orphan Europe, volunteering at Barretstown, Ireland


Page created: 23/10/2012
Page last updated: 02/04/2013
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