Watch Dateline’s 2021 episode Born Small on SBS On Demand.

Since the age of five months, Casper has been enrolled in a trial of the controversial drug vosoritide, which stimulates bone growth. It requires daily injections.

“Just to see him sort of grow into this really fun, loving, happy little boy who, whether or not he’s aware of his difference, doesn’t let it stop him at all,” she said.

What is vosoritide and how is it used to treat achondroplasia?

For people with achondroplasia, injecting vosoritide daily from the age of two until adolescence when the growth plates in bones are open, can support the body to continue bone growth past the usual length for people with achondroplasia.

Casper joined the drug trial when he was five months old. Credit: Supplied

For the first year of the trial, one in two patients was given a placebo.

“His father and I both thought, yep, this is the right thing for us and our family and our son. And we just trusted that gut feeling,” Daisy said.

Daisy and Casper at a drug trial appointment when he was a baby. Source: SBS / Dateline

The decision to put Casper on the trial was informed by conversations with his medical team, who provided some “really sobering statistics on what life might look like for Casper”.

“Talking to Casper’s medical team about some potential health complications that he may face when he’s older was really sobering for Casper’s dad. And it was a big impetus, I guess, for us to get Casper involved.”

Children can also suffer from sleep apnoea and recurring ear infections.

Vosoritide access in Australia

It was anticipated then that around 140 children will benefit per year.

Daisy says she “just [loves] every second” of parenting Casper. Credit: Supplied

Daisy said that over the last few years, while Casper has had some minor health issues, they’ve been “manageable”. Casper has also grown into an “athletic and sporty little boy”.

But the drug trial has also been controversial, prompting concern from some members of the short-statured community.

A ‘frustrating’ vosoritide experience

Becky, a disability advocate based in the United States, has achondroplasia. She was “eager” to have a child like her and in 2021 was “thrilled” when she got the diagnosis for her son Jackson.

Becky found it ‘frustrating’ that health professionals would consistently suggest vosoritide. Credit: Supplied / Elizabeth Talbot Photography

Becky was considering not pursuing vosoritide treatment for Jackson. But she said that in follow-up appointments after his birth, she felt pressure to consider it as an option.

“I think people want everyone to be aware that the option exists, but there’s that fine line of forcing it on someone and giving them the option to decide.”

Why Becky is concerned about vosoritide

“Is it the family that doesn’t feel confident about their child’s future that’s trying to fix them?”

Tragically, Jackson died when he was 6 months old. According to an investigation by the Massachusetts Department of Public Health, this was due to a series of staff errors at a hospital sleep test.

Becky’s continued fight for inclusion

“[My surgeon] told me to try really hard to focus on the positive and that’s the physical strength. And in passing, she said to me, I could see you doing a 5K someday.”

She’s continuing to train in one-mile races and hopes to compete in a 5km race in November.

Earlier this year, Becky ran a one-mile race in New York. Credit: Da Ping Luo for NYRR

For Becky, the sense of community and support from these races is key to her “vision for society”.

“We continue as people with dwarfism, as people with disabilities to feel excluded in society. Until we can get to that day where everyone feels welcome, I’m not done with my advocacy.”

Mixed feelings among the short-statured community

In her experience, everyone has been “really respectful of whether or not you choose to be enrolled in the study”.

“Anything I can do to make his life that little bit easier, to me, that just seems like a no-brainer.”

‘Really weigh the options’

Becky sees her role as advocating for people of short stature and disability inclusion more broadly, no matter what treatment people take.

A focus of Becky’s advocacy is ensuring people with disabilities don’t feel excluded in society. Credit: Supplied / Rick Guidotti / Positive Exposure

She wants to tell other people with disability to “not be ashamed of who you are and really weigh the options”.

“At the end of the day, it’s your decision, but there is so much positivity out there, even if you don’t pursue that route. There are possibilities.”

“And at the risk of sounding like a really biased, proud mum, I am loving every moment of being Casper’s mum.”