The Women’s & Children’s Hospital Foundation believes that everyone deserves to have great memories.
Of course, it is not easy for some, especially parents like Michelle and Marty Roberts, whose son, Sam, died not long before his fifth birthday in 2005 from Niemann-Pick disease type C, a very rare genetic neurological degenerative condition.
Sam never walked; in fact, he never crawled. During the other half of his life out of hospital he sat in the family home hallway and stared at the front door. He became excited when someone walked through, and cried his heart out when they left.
However, this isn’t just about Sam and the sadness, but a beautiful, positive story of how this little boy continues to bring families and numerous friends even closer together; how his legacy will forever provide fond memories through the deepest times of despair.
Most of all, it highlights the often forgotten silent sufferers – grandparents and siblings – without diminishing the immense pain felt by the parents.
Amazingly, Michelle and Marty, and their other children, Lucy, 21, and Charlie, 16, established Cycle4Sam Ride, a fundraising fund, which since 2006 has raised $750,000 for the W&CHF through a biennial charity cycling event.
With this support, and the generosity of so many other corporations, small businesses and every-day people – particularly throughout regional SA – the Foundation is currently building a beach house, a holiday retreat at Encounter Waters, Victor Harbor for children seriously ill – and their parents or carers, siblings and grandparents.
This is not just about Victor Harbor either, but the dozen or so other young people right across Australia with Niemann-Pick disease type C, and those with an equally unmercifully cruel condition that breaks our hearts.
Sam’s grandparents, Judy & Russell Ward, and Margaret & Peter Roberts, their other children and their extended families, have all provided unconditional love and support for Michelle and Marty. Judy and Russell recalled the huge challenge when family members took Sam, when aged two, to the Gold Coast for a holiday. The kindness of Qantas, the theme parks and so many other people was incredible.
Russell said Sam was probably a bit beyond understanding the theme parks, but it was certainly respite for the whole family. “He was able to love all the people around him and the sights, and this quality time together away from the hospital surrounds was special,” Russell added.
“We were there for Sam, always around him, but inside as a family we knew we also had to be there for each other. Parents often find it difficult when their child has a serious illness… some go the other direction and one will disappear. We cannot judge because no one can never know what they have gone through.”
Judy said having shared the experience of this strain with other families it was not uncommon where the parents stuck together, but once the child had deceased sometimes they found it too hard to remain together because of the reminders. Statistics suggest an 80 per cent marriage split.
“Places like this beach house being built may make all the difference for some because it can create the good memories, the quality moments that give you that strength to get through the tough times together,” Judy said. “It is never easy for the parents, but sometimes forgotten is that it is never easy for the grandparents and siblings either.
“There is no monetary value that you can put on having a beach house where everyone may stay for incredibly wonderful days under the one roof during times when families are struggling to cope.”
According to Judy, Sam loved it when different groups came to see him in hospital, caring young men from the Adelaide Crows and Port Power, the RAAF Roulettes flying team, clown doctors – all sorts of kind-hearted groups. Russell recalled the family Christmas Day lunches and Boxing Day Test cricket matches down the hospital corridors, probably making more runs than our current Test team.
However, both Judy and Russell said nothing came close to the memories of the Gold Coast because they were not consumed in a hospital environment when the days became darker.
The W&CHF beach house is special because it has four bedrooms specially equipped to cope with medical emergency needs. Power points had to be strategically placed; the bath alone cost tens of thousands of dollars. Overall, families will walk in with everything provided including meals and other needs, and everything else taken of, mostly by volunteers.
Those who stay here will hopefully one day share the same wonderful outlook on life as Michelle and Marty.
“It’s not so much they have lost him; they have taken Sam with them right through,” Judy said. “Sam is always included in conversation; he’s included in writing greeting cards. It is just beautiful.
“They treasure the time they had with Sam, they have accepted what has happened. They also had their worrying periods because Niemann-Pick disease type C is a genetic illness and there was a 25 per cent chance the other siblings would have developed it, but thankfully they have come through extremely healthy.
“Yes, Sam was gorgeous; he always will be. We have all taken him with us, and we just hope that through his story and the beach house other families will have some wonderful memories and find the strength to support each other.”
The Sam Roberts Family Fund proudly supports the Paediatric Palliative Care Service of the Women’s and Children’s Hospital, which provides care and support for children with life limiting rare diseases and their families in South Australia. More information, and to donate visit: wchfoundation.org.au
Among key considerations that the W&CHF still needs help to raise funds for include: whitegoods and small electrical appliances; cookware, dinnerware and glassware for the kitchen and outdoor entertaining area; TV/Media Entertainment systems (multiple spaces); purchase of books, games and sports equipment for family activities; landscaping including plants, decking, fencing, paving and the purchase of outdoor play equipment and furniture; full furnishings and interior decoration of bedrooms and living areas; purchase and installation of specialised medical equipment and purpose built furniture to suit special medical needs of families.