Toddlers chuckling and smiling as they zip around on wheelchairs is not a common sight at a children’s birthday party.
But Sunshine Coast mum Golden Whitrod wants to make it just as conventional as the jumping castle in the background.
WATCH IN THE VIDEO ABOVE: Tallulah lights up the world with her cheeky smile
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As she watches her three-year-old daughter, Tallulah, effusive with laughter, the friend on a wheelchair opposite jumps off and allows another child in line to take it for a ‘spin’.
For Tallulah, there are no ‘turns’ – her chair is her mobility.
And, diagnosed with a rare progressive brain disorder – spastic paraplegia type 56 (SPG56) – the little girl’s future is unclear.
With no Cure, the hereditary disorder weakens and stiffens the muscles, eventually Stealing a patient’s physical and Cognitive abilities.
Tallulah is now one of just two participants in a world-first gene therapy trial, being undertaken by Queensland researchers.
It’s hoped the trial, which began this month, can result in a Miracle breakthrough to slow the progression of SPG56.
In the meantime, the toddlers’ parents say their daughter never stops Laughing, despite what she’s going through.
“She is just the light of our lives,” Golden tells 7Life.
“And it is our mission to keep her this happy.”
About 100 individuals worldwide are living with SPG56. Many were diagnosed at birth.
For the little girl, the disorder slowly freezing her muscles wasn’t discovered until just after her first birthday.
“I had the perfect Labor and birth and up until 14 months she was hitting all of her milestones,” Golden says.
The cheeky tot would run around the house and backyard, causing havoc with big brother, five-year-old Finn.
Until one day she just stopped.
She stopped walking. Then she stopped crawling. Then she stopped wanting to move all together.
“We were in Panic stations,” the mum says.
Tallulah underwent a variety of blood tests and exams until finally the Whitrods had their answer – SPG56.
With so few cases around the world, and minimal funding for research into spastic paraplegia, Doctors didn’t have a particular insight into the disorder.
Told her daughter’s was, in fact, the only case in Australia, Golden says, “It felt like we were thrown into the Pacific Ocean on a life raft.”
With the family essentially alone and having no answers, Specialists advised the best thing was therapy to help keep Tallulah moving, and hopefully slow down the hardening of her muscles.
The parents were worried how they would convince a toddler to attend physiotherapy, speech therapy and numerous other strenuous medical treatments daily.
But Golden was, and still is, blown away by her little girl’s willingness to learn, saying she is an “Absolute Joy” to take to therapy.
Investing in a wheelchair for their daughter, the parents also turned to Facebook to purchase a second-hand one for Finland.
Golden and her husband Chris never wanted Tallulah to feel like she couldn’t play with her peers so they encouraged her brother to “get on her level”.
The parents now struggle to pull Finn out of the chair.
Double the trouble – now on wheels – the kids spin around the house and yard playing hide and seek.
Seeing the Joy that the wheelchair brought to both Tallulah and Finn’s faces, it is now a regular at kids’ birthday parties.
“The kids playing on the chair with Tallulah is Incredible,” Golden says.
While there is no treatment or cure for the debilitating disorder, seeing her children smile makes navigating the scary road that much easier.
And Golden says she feels “Lucky” to be in her position.
“I know it sounds crazy for a mother whose daughter is so unwell,” the 40-year-old says.
Tallulah and Alissa
Tallulah is now taking part in research at Griffith University in Queensland, aimed at finding a drug breakthrough.
Having never physically studied an SPG56 case before, researchers – led by 2017 Australian of the Year, Professor Alan Mackay-Sim – jumped at the chance to try to help Tallulah.
And in a world first, two cases of SPG56 met.
Alissa Lim, who is just six months younger than her Aussie counterpart, Flew from Singapore to Queensland.
Researchers have now begun to analyze stem cells from both toddlers in the hope of finding ways to slow down the disorder – or ideally stop it altogether.
“Progression was, it still is, the big question,” Golden says.
“We know there is a boy who is 18 living with SPG56 in Turkey, he is the poster boy!”
The world-first meeting proved a special moment, not just for the researchers but the families too.
For the short week that the Lims were in Australia, the Whitrods opened up their home to their new friends.
Sharing therapy equipment disguised as toys, Tallulah and Alissa formed an Unbreakable bond.
And the adults also found comfort in speaking with each other.
“There is this unspoken bond between them – especially for the parents,” Golden says.
Golden and Chris have started a Charity called Genetic Cures for Kids with their first goal titled Our Moon’s Mission – after Tallulah Moon Whitrod.
Through the Charity, they have raised more than $ 500,000 towards studies into SPG56.
And, with the help of spastic paraplegia Facebook Pages, the Whitrods and the Lims no longer feel alone.
Supported by their international peers, momentum and assistance for rare disorders continues to grow.
Golden says, “It’s just the beginning”.
Tallulah’s parents hope the work of the Queensland researchers can be a template for other variants of spastic paraplegia and help thousands of people around the globe.
The Whitrods believe the Cure for many rare diseases is out there – they say the funding just needs to be more accessible.