- Golden Whitrod, 42, from Sunshine Coast, Qld gave birth to Tallulah Moon in March 2019
- When Tallulah was 14 months old began declining
- Eventually, she was diagnosed with hereditary spastic paraplegia type 56 (SPG56)
Here, Golden shares her story in her own words.
‘You’re going to be a big brother,’ I smiled at my beautiful toddler Finn, then two.
Earlier that day I’d spotted two pink lines on a pregnancy test at home.
Sharing the news with my husband Chris, then 38, he was filled with joy.
We loved our life living in Darwin, and now we couldn’t wait for Finn to have a sibling to play with.
At every scan, we were pleased to hear our bub was growing well.
Though we agreed to keep the gender a surprise, I was convinced I was having a daughter.
And in March 2019, we welcomed a beautiful baby girl, who we named Tallulah Moon. Seeing her gorgeous blue eyes and her dimply smile, it was love at first sight.
‘She’s such a firecracker.’
Doting on his little sister, Finn was by our girl’s side when she hit all of her milestones, such as learning to roll over onto her tummy and crawl.
And after she began to cruise around the room holding on to furniture at 12 months, there was no stopping her.
She’s such a firecracker, I’d think.
Tallulah could babble a few words too.
One day in May 2020 when she was 14 months old, I asked Tallulah to crawl towards me. Usually she was so speedy, bursting with energy, but this time she was slow and her arms were limp. She had a terrified expression painted across her face – it was as if she was screaming ‘help!’ from the inside.
‘What’s wrong sweetheart?’ I asked, rushing to her side. But all she could do was cry.
Concerned, we rushed her to our GP. ‘It’s normal for children to regress at her age,’ he said.
Over the next 10 days at home though, our girl rapidly declined. Gone was our bubbly energetic bub. Instead, Tallulah was quiet and stiff.
She’d lost the ability to crawl, struggled to raise her arms above her head, and couldn’t even lift her neck.
She also struggled to swallow and when she choked on her lunch one day, I was terrified.
Rushing her to hospital, after tests doctors thought she had leukodystrophy – a cluster of rare brain disorders affecting the brain’s white matter.
‘Her condition kept slowly worsening.’
‘Tragically, there’s no cure,’ they said, adding that if that was the diagnosis our beautiful girl only had months to live.
But we wouldn’t know for sure until she underwent genetic testing. Chris and I were absolutely devastated.
Doctors also took blood samples from me and Chris to help with their research.
To make the most of our time with Tallulah, we took her to the park every day and played her favourite music from Disney film Moana, turning the living room into a disco.
Frighteningly, her condition kept slowly worsening.
Four months after the genetic testing, when Tallulah was two, the results came back. While Tallulah didn’t have leukodystrophy the results were just as horrifying.
Our little girl was finally diagnosed with hereditary spastic paraplegia type 56 (SPG56).
‘It’s a rare and progressive brain disorder that will cause her muscles to slowly freeze over time,’ the specialist explained.
Devastatingly, the abnormal gene had been passed down from both Chris and me, resulting in the incurable, life-limiting condition.
‘Go home and love your daughter,’ he said, unsure of how long Tallulah had left. Chris and I were shattered.
‘We have to fight,’ I said, vowing to do everything in our power to find a cure for Tallulah and other people living with SPG56.
To help slow down the progression of her condition, Tallulah began daily physiotherapy, speech therapy and aqua therapy.
We also got her a wheelchair to help her get around. Not wanting Finn to feel left out, we got him one too.
Watching the pair zoom around together, just as they used to chase each other around the backyard, filled our hearts with so much joy. Through the therapies, our girl’s condition slowly improved.
Eighteen months after her diagnosis, she was able to use her hands and arms to push her wheelchair. She also regained strength in her neck.
And she communicated with us using a visual app on her iPad, as well as sign language.
Despite everything she was going through, Tallulah was still such a happy, bubbly girl.
In November 2021, I also founded a charitable foundation called Genetic Cures for Kids.
Our first campaign, which we lovingly named ‘Our Moon’s Mission – Help us cure SPG56’ was to educate, and to raise money to help fight the genetic disorder. We even hired our own team of scientists to find a cure.
Over nearly four years, we’ve raised almost $2.5 million through fundraisers, as well as the sale of our home, towards gene therapy to help stop SPG56 in its tracks.
Thanks to the hard work of medical researchers, we now have a medicine that’s ready to get manufactured for a human clinical trial, once we reach our goal of $5 million.
We will do anything to save our precious girl.
Amazingly, Tallulah, now five, is regaining her ability to speak.
‘I love you. I’m strong,’ she smiles, wrapping us in a big cuddle.
And Finn, now eight, is always helpful, making her brekkie and bringing toys over to her.
Next year, Tallulah will be joining her big brother at school and we couldn’t be more excited for our girl. She’s shown us that when you’re faced with the unthinkable, there’s always a reason to smile.
To donate, visit ourmoonsmission.org
