Family's race against time to make memories for terminally ill toddler
Doctors have given a family just months to make memories with their two-year-old daughter after a devastating diagnosis stripped away her ability to walk and talk.
A Whitsundays family is racing against time to create precious memories with their two-year-old daughter after doctors confirmed she is one of just two children in Australia diagnosed with a rare and devastating terminal disease.
Saylah Moylan-Starkey was diagnosed with Batten disease (CLN1) just before her second birthday and was quickly placed in palliative care.
Her mother, Tess Moylan, said the changes in her daughter only began in July and have progressed at a terrifying pace.
“She has changed so much in the last couple of months, it’s actually kind of hard to describe how she is,” she said.
“No one day is ever the same. It is something different every day.
“Within that time frame of us waiting for the results is when she lost a lot of her skills, like the ability to walk, clap and talk and wave and all those sort of things.”
The signs first appeared when Saylah was about 18 months old, and a few months later the family received the diagnosis after extensive genetic testing.
“They have explained to me that at this current point in time, she is one of two children in the whole of Australia who have Batten disease CLN1,” Ms Moylan said.
The condition is so rare, she said she often found herself explaining it to medical staff.
“They don’t even know because it is that rare,” she said.
“A lot of the hospitals and the doctors and even genetic and metabolic teams from QCH in Brisbane don’t even really have much information to give me because they’ve never experienced a child with Batten disease before.”
Doctors told the heartbroken family the disease will continue to strip away Saylah’s abilities as it progresses.
“She will inevitably go blind, she will go deaf and she will basically lose every ability to do anything,” she said.
Within weeks of losing the ability to walk, Saylah began experiencing severe seizures.
“She was having seizures that lasted over an hour,” Ms Moylan said.
“We basically weren’t going to be leaving the hospital with her if they couldn’t get her seizures under control.”
She said many of the episodes were “quite scary”, with the parents being told the medication she needed could stop her breathing.
Ms Moylan said she and her partner were sat down and had to make the “brave” decision to sign a do not resuscitate order for their daughter.
Shortly after, the family was given even more devastating news.
“They said they don’t believe we would have years with her,” she said.
“They said they think we’d only have a couple of months if she continues to have these seizures.”
The family has now been urged to go home and do everything they can with her while she is still here.
“Make as many memories as we can,” she said.
Ms Moylan said the whole family had been distraught when they learned of the diagnosis.
“It has been extremely hard and it has taken quite a toll on myself but I have found the more that I have spoken about it, the easier it is to talk about it.” she said.
“The first couple of weeks were really hard and I did sort of shut down and I was like, how am I going to do this? What am I supposed to do? These people don’t even know how to help my daughter.”
“So it was quite emotional and hard but luckily, because I have a good support system around me and family members, they’ve reassured me that I can do it and we’ve just put each other together.”
Through all of the heartbreak there have been some beautiful and bittersweet moments, including when Saylah suddenly laughed for the first time in a long while.
“She hasn’t laughed or giggled in such a long time,” she said.
“One day there she just started laughing and giggling and it was such a heartwarming moment.
“I ran into my son’s room with her in my arms and I was like, ‘Look Ollie’, and she was laughing and giggling and my son actually turned around and said, ‘Is she better? Is she okay now?’, and it made me really upset.”
Despite the prognosis, they are fighting for a chance to get Saylah onto an experimental trial in the United States.
The drug could potentially slow the regression, but they were told she may be “too far gone”.
“We’re going to fight and argue the point of why can’t she be a part of that trial still,” Ms Moylan said.
“She still has some abilities and skills … so why couldn’t she still be a part of the trial?”
She said the Batten Disease Australia Association had told them the drug itself would be covered, but the family would need to fund travel and accommodation overseas.
For now, they are planning trips to Brisbane and Melbourne to create memories with Saylah.
“We can see all of my partner’s family and we can go do something there with all of the kids as well, like go to Movie World and get photos with all of the characters or something like that, would be lovely memories.
“And then as well to go down to Melbourne to see all of my side of the family and go do some things down there.”
The Whitsundays community has already begun rallying around the family, with Saylah’s former daycare organising her GoFundMe, bake sales and a major raffle.
“It has been absolutely amazing,” Ms Moylan said.
“It’s just amazing to see how many people have come together already so far.”
With her and her partner unable to work while caring for Saylah through repeated hospital admissions, the fundraiser has helped the family stay afloat and begin organising trips.
She said Saylah was very loved in the Whitsundays community, with strangers even coming up to meet the toddler in shopping centres and asking how she is doing.
Ms Moylan said she hoped sharing their story would raise awareness of Batten disease and the enormous toll it took on families.
“I want this disease to be known to people and people can actually have an understanding of what it actually is,” she said.
