How grief for dad became campaign

Even in her father’s final days, Lara Fresson thought he could make it.

Diagnosed with acute myeloid leukaemia at age 66, Stephen Fresson, of Floreat, had spent five agonising months on the stemcell waiting list.

He had fought bravely against the effects of the disease, playing the part of the fit recipient while his body wasted away.

In November, his family were given a glimmer of hope.

“We found out they were in the preliminary stages of finding a match with someone overseas,” Ms Fresson, 28, said.

“All they told us was that the person was overseas and they were youthful.

“We thought: ‘If Dad turns a corner now, there might still be time’.”

Her father’s condition worsened, however, and he died surrounded by those closest to him on November 25.

He left behind a devastated family and a network of friends he had made through his role as the general manager of a mining exploration company.

The heartbreak and frustration of his decline has compelled Ms Fresson to become a volunteer recruiter for the Australian Bone Marrow Donor Registry.

About 30 per cent of Australians on the waiting list will never find a stemcell or bone marrow donor.

Only 28,000 West Australians are on the Australian Bone Marrow Donor Registry.

Only 28,000 West Australians have gone through the simple process of signing up to the ABMDR, a process that could have saved her father’s life.

The organisation has two staff members in WA and does not benefit from government-funded awareness campaigns familiar to other causes.

Ms Fresson, from Innaloo, is using social media, group presentations and anything she can to convince people to join the registry.

The Mercedes College physical education teacher is doing it to save other families the anguish she went through with her brother Austen and mother Karen.

Their nightmare started just under a year ago in May.

“I knew things weren’t good when Dad was taken straight to hospital for a bone biopsy,” Ms Fresson said.

“To me, biopsy meant cancer and I think he had some idea it wasn’t good, too.

“He was strong the whole way through it. He asked questions and he was straight down the line. I’m pretty emotional person so I lost it from the get-go.”

Her father had AML, a blood cancer characterised by the overproduction of immature white blood cells that clog the bone marrow and lower the number of normal blood cells.

The immature white cells are not capable of defending the body against infection, while the normal red blood cells and platelets are needed to carry oxygen and clot the blood.

The disease is relatively rare, accounting for less than one per cent of the cancers diagnosed in Australia each year.

Lara Fresson has raised almost $13,000 for the Harry Perkins Institute of Medical Research.

The effects are debilitating, the prognosis is bleak and Mr Fresson had a particularly bad case.

His body soon lost the ability to protect itself from even the mildest sickness, so about five days after each bout of chemotherapy, he would become ill and his family would have to take him back to hospital.

Through it all, Ms Fresson said he remained surprisingly upbeat, shaving his head before all of his hair could fall out and trying to take the treatment in his stride.

He briefly went into remission and the family took advantage of it, flying to his home country England in September, knowing it could be their last holiday together.

The reprieve was short-lived.

His genetics all but guaranteed he would need a stemcell transplant, so they were forced to wait for a match among the world’s 25 million donors.

It was a battle to hold on to a frail sense of optimism but his family was there for him and it only brought them closer together.

“Dad was a true English gentleman, but he really let his guard down and showed his emotions when he became sick,” Ms Fresson said.

“He always did everything for us. He always worked so hard but he became more emotional.

“He would cuddle me. He wasn’t afraid to cry. When you’re faced with your mortality, it’s a bit of an awakening.”

As the wait for a donor stretched on, Ms Fresson started getting involved in charity events, raising almost $13,000 for the Harry Perkins Institute of Medical Research through the Ride to Conquer Cancer in October.

Former Perth Glory player Bobby Despotovski was involved with the campaign.

Her father tried to stay in decent shape to be ready for a transplant, but despite his common tissue type, his efforts were in vain.

“Because he was a little bit older, he was proving that he was still fit to show he was a good candidate,” she said.

“Dad wanted the opportunity to show he was fit enough and healthy enough to have a stemcell donor, and he never got that chance. If Dad had gone after having that chance, I would have felt OK, but he didn’t get it.”

In her father’s absence, Ms Fresson focused her energies on helping the ABMDR and its WA co-ordinator Sue Jackson, who she had met in the previous, difficult months.

Ms Jackson has too much on her plate to be out of the office recruiting regularly, so she relies partly on volunteers, most of whom have been through the process with a loved one.

As was the case with Ms Fresson’s fundraising efforts in the Ride to Conquer Cancer, her approach to recruitment has been effective.

Her message is that joining the registry is simple — all you have to do is fill out a questionnaire and give two vials of blood, the same amount taken during a garden-variety blood test.

That is all it takes to save a life.

One of her presentations at the Wembley Amateur Football Club last month added 23 names to the register.

She targeted the football club because young men are the ideal donor group within the 18 to 45 enrolment age window.

She is also continuing to use social media as a tool for change, asking people to post a photo of themselves joining the registry accompanied by the hashtag #donateforsteve.

The campaign made good use of social media.

While the negative effects of social media are plentiful, its ability to spread a message exponentially or unite people through a cause is undeniable.

One interesting example was the ALS ice bucket challenge, the video awareness campaign which started in the US and went viral.

That particular craze arguably went full circle and crossed back into the superficial side of social media, but motor neurone disease foundations across the Western world took an unprecedented shot in the arm.

“I think through social media people almost go through the story with you,” Ms Fresson said. “They heard about Dad being diagnosed, they heard about the fundraising, they heard about Dad passing away and they heard about me joining the registry.

“They follow the story with you or they read the story and the natural progression is ‘Hey, how can I help?’”

Ms Jackson, a long-time ABMDR co-ordinator who works out of the Blood Donor Centre in the city, said the organisation was under-resourced and it welcomed the efforts of people like Ms Fresson.

After 24 years of meeting and farewelling families, she is intimately aware of the heartbreak involved in waiting for a donor, and she cannot recall one print, radio or TV advertising campaign that encouraged people to join the registry.

Ms Jackson considers herself a bit “long in the tooth” for social media but she has seen the results.

“It’s definitely the way of today for getting the word around,” she said.

“Lara has been very proactive in recruiting donors on to the registry which isn’t an easy thing to do.

“She isn’t going to stop there either. She’s going to put it out to other clubs or workplaces and organise more.”

For Ms Fresson, the recruitment efforts have given her a purpose and a distraction in the long months since her father died waiting for a donor.

Her family visited his grave a few weeks ago on what would have been his 67th birthday.

Getting more people to join the registry is one way she can honour the memory of a loving family man who deserved another chance at life.