Touched by Olivia - Interview with Justine Perkins
By Emmet O’Cuana, The Centre for Volunteering
Following the tragic death of their infant child, John and Justine Perkins were inspired to create a charity dedicated to helping young families of children born with disabilities, or serious medical conditions.
Their story is a remarkable one for their willingness to invoke the memory of their deceased daughter Olivia in order to achieve their aims, not to mention the extraordinary success that followed. As young parents, with a two-year old child to raise, the couple felt that no one else should have to face the difficulties that they had encountered.
Olivia was born suffering from a rare disease that is classified as a vascular malformation. In order to allow her to breathe properly a tracheotomy was performed. John and Justine had been looking forward to taking their daughter home when she passed away.
Determined to honour the memory of their child, the couple used their professional contacts to help set up the Touched By Olivia Foundation, a grassroots organisation that relied on donations and a staff of volunteers to accomplish its aims.
The Touched By Olivia Foundation raises funds to assist the Sydney Children’s Hospital treat diseases and conditions that perhaps do not command as much attention as cancer, but are no less insidious in their cost to young lives.
The Foundation also provides assistance for families who face an uncertain future due to the continuing need for medical assistance for their child. From home care to playgrounds, these children are denied access to a ‘normal life’, something which can be very daunting for their parents. The Foundation not only provides a network that offers advice to families, but has created Livvi's Place a customised playground for children that caters to all kinds of kids, regardless of their specific needs.
The Foundation lobbied its local council to give planning permission for the first Livvi's Place, with a cost of over one million dollars. They organised special events to spread their message of providing care in the community for the most vulnerable, such as the Butterfly Ball and Family Fun Fairs. This allowed the Foundation to promote facilities such as Livvi's Place on a national level, a project which will be managed on a community level, with John and Justine acting in an advisory role now that their campaign's initial momentum has taken hold. In the past four years the Foundation has successfully raised $750,000. Over the next year, two further Balls will be dedicated to raising funds exclusively to help Sydney Children's Hospital provide medical care to sick or disabled children.
Justine offered advice to other start-up charities hoping to raise funds for their cause: Serious thought should be given to the goals of the organisation. It is very hard work, very personally demanding and sometimes a lot of guilt can come with it too, due to the time and effort given by volunteers.
"I just feel that I can never repay them personally, but I also hear that 'what you have given us the opportunity to do, speaks louder than words, so [much] louder than a weekly pay packet'. You’ve just got to get your head around that and accept that people are going to do it because they want to do it,"said Justine.
Many people may consider that the work of the Foundation is rightly the responsibility of the public health authority. However, Justine argues that in lieu of waiting for government action, communities should stand up and do what they can to solve problems. "John and I have this philosophy, don’t ask why, just ask why not?" Their cause has attracted considerable media interest, with Jay Laga'aia acting as a spokesperson for the Foundation and singer Damien Leith agreeing to perform at their Butterfly Ball. Justine attributes their success in this regard to a combination of luck and determination.
The Touched By Olivia Foundation continues to grow from strength to strength. John and Justine's story proves that volunteering can make a positive difference to the lives of many people within the community.
"I’m just so thankful and grateful to the people who have supported us. We are only as good as our volunteers and I recognise that. We’ve been very blessed."
Justine Perkins, of Drummoyne, is a nominee for the 2010 NSW Volunteer of the Year Award.