‘We were basically living in hospital for two years’: Family raises nearly $1m in son’s memory

He was just three years old when he was admitted to hospital but despite years of treatment, little Sam never made it home. Now, his parents have raised almost $1m in his honour.

Little Sam Roberts died just before his 5th birthday of a rare neurological degenerative condition called Niemann-Pick Disease Type C, spending the last two years of his life in hospital. Picture: Supplied.

The parents of an adored little boy who was admitted to hospital with a rare disease aged three and died there two years later having never left have raised a million dollars in their son’s name.

Michelle and Marty Roberts lost the second of three children, Sam, to a rare neurological degenerative condition called Niemann-Pick Disease Type C just before he turned five.

He was diagnosed aged two with his devastated mum and dad managing family life around him in hospital when he became too unwell to stay at home.

“The day after his third birthday he went into hospital and he remained there until he passed away just before his fifth birthday … we were basically living in hospital for two years and juggling a young family,” Mrs Roberts said.

The adorable little Sam Roberts. Picture: supplied,

Sam was diagnosed aged two. Picture: supplied.

“Older sister, Lucy, had just started school and little brother, Charlie, learned to crawl, walk and talk in the hospital ward.

“We tried to have a family member with him all the time; initially I would come in and look after Sam during the day and Marty would come in at night, sleep over and then go off to work in the morning.

“It can be a very isolating experience having a diagnosis of a child with a life-limiting illness … we experienced chronic grief … all those lost hopes and dreams you have for your family, and for Sam.”

His dad describes his eldest son as “cheeky … with the most beautiful smile that would light up a room”.

“Unfortunately, the nature of his disease was that he gradually lost his bodily functions and the hardest one was when he lost his ability to smile,” Mr Roberts said.

Little Sam Roberts was “cheeky … with the most beautiful smile that would light up a room”, doting dad Marty said. Picture: supplied,

Sam died in 2005 and Mr and Mrs Roberts and their children – Lucy is now 26 and Charlie, 22 – have since wanted to help other families through the heartache of learning their child has a terminal illness.

“When Sam died, we decided to create a fund within the hospital and our initial thought was to support families in SA with children who have rare, life-limiting illnesses … each year in this state about 25 kids will be diagnosed,” Mr Roberts said.

“The ongoing connection with the hospital – where the care Sam got was just incredible – through our connection with the Women and Children’s Hospital Foundation keeps us connected in a sense to Sam – it allows us to honour his memory,” Mrs Roberts adds.

The Roberts family juggled life around little Sam who was diagnosed with a rare neurological degenerative condition and died just before his fifth birthday. Picture: Supplied.

Michelle and Marty Roberts have since raised $1 million for the Women’s and Children’s Health Network (WCHN) Paediatric Palliative Care Service (PPCS) in his honour. Picture: Supplied

Almost a million dollars raised by the family through a series of charity bike rides and other events has been used to support the pediatric palliative care service, including for a special kids’ art therapy program.

It will now help fund a new program to support families experiencing the death of a child.

“Families draw on their strengths and support networks, but the unique responses of families

requires a specialised, professional bereavement service … we are so very proud to be able to support more families through (this) new program,” grief and loss co-ordinator Dimi Patrinos said.