{"id":599721,"date":"2026-09-14T04:26:18","date_gmt":"2026-09-14T04:26:18","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/599721\/"},"modified":"2026-09-14T04:26:18","modified_gmt":"2026-09-14T04:26:18","slug":"nine-year-old-perth-girl-tilly-holds-key-to-stamping-out-dementia-after-a-miraculous-world-first-trial-success","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/599721\/","title":{"rendered":"Nine-year-old Perth girl Tilly holds key to stamping out dementia after a miraculous world first trial success"},"content":{"rendered":"

Nine-year-old Perth girl Tilly is like any other child her age \u2014 with an interest in everything from netball to hair braiding and craft \u2014 except for one incredible, almost unbelievable aspect that has left the medical community in awe.<\/p>\n

The bubbly Year 4 student was born with a rare gene mutation in her DNA and was diagnosed with childhood dementia, which carries a grim prognosis of a cruel, gradual cognitive decline before death, usually before turning 10.<\/p>\n

So when her parents Kate and Lachlan Page were delivered the shattering news about their \u201crainbow baby\u201d who was just three months old, their worst nightmare began to unfold.<\/p>\n

\u201cWe had this beautiful baby, I have this man that I loved, life was good. And then it all just got taken away really quick,\u201d Mrs Page told Sunday night\u2019s 7NEWS Spotlight.<\/p>\n

\u201cI had this beautiful healthy baby, and they told me she was going to die.\u201d<\/p>\n

\"***Camera Icon*** ONLINE OUT UNTIL AFTER AIRED ON SPOTLIGHT *** 7NEWS Spotlight – Tilly was born with childhood dementia. Tilly’s parents Kate and Lachlan Page. Unknown Credit: Unknown\/7NEWS Spotlight<\/p>\n

The parents, who before Tilly had lost a baby at 21 weeks, took a fortnight to grieve after being told all they could do was cherish the precious time they had left before their daughter would succumb to the incurable disease.<\/p>\n

But after two weeks of sorrow, a surge of frustration hit Mrs Page.<\/p>\n

\u201cI pulled my socks up and went, \u2018well that\u2019s not good enough\u2019,\u201d she said.<\/p>\n

That moment laid the foundation of a whirlwind nine months, during which time the parents discovered an experimental medical trial headed by Dr Nick Smith, the Head of Neurology at the Women\u2019s and Children\u2019s Hospital in Adelaide.<\/p>\n

The trial could accommodate just 33 patients worldwide and only four children in Australia, but its exclusivity wasn\u2019t the only barrier for Tilly.<\/p>\n

Her mum and Dr Smith had to fight medical ethics authorities to allow Tilly to take part, because at one year old, she was deemed too young.<\/p>\n

\"DrCamera IconDr Nick Smith ran a world-first experimental trial. Credit: Unknown\/7NEWS Spotlight<\/p>\n

The family was ultimately successful with their pleas and Tilly was given the green light to participate as the youngest global candidate. But not before her parents were faced with more realisation of what the reality of her involvement would be.<\/p>\n

\u201cYou have to sign off this paper that says, \u2018are you willing for your child to die by taking this experimental drug?\u2019. We looked at each other and said, \u2018we are, because she\u2019s going to anyway\u2019,\u201d Mrs Page said.<\/p>\n

The revolutionary world-first gene therapy medicine was their best and only hope, and aged 12 months and two weeks, Tilly underwent the single-dose treatment, which was over in less than an hour.<\/p>\n

\u201cAfter all of that, it was the most anticlimactic thing,\u201d her mum, who breastfed Tilly during the procedure, said.<\/p>\n

The trial and the hope it offered the family was not available to Tilly\u2019s uncle, Quinnton, who died 43 years ago from childhood dementia, two months before his 15th birthday.<\/p>\n

\"MargaretCamera IconMargaret Page lost her son, Quinnton, to childhood dementia. Credit: Unknown\/7NEWS Spotlight<\/p>\n

Mr and Mrs Page had sought medical advice on the risk their child would have the disease, knowing the genetics runs in their family, and were told not to worry because only one of them was a carrier, not both.<\/p>\n

The advice was proven wrong when an abnormality arose in Tilly\u2019s tests, and a cross reference with Quinnton\u2019s medical paperwork, that the hospital had held onto, confirmed that she was in fact born with the same gene mutation.<\/p>\n

\u201cI was devastated. My first grandchild, knowing at three months of age that she won\u2019t have a future … I felt like it was so unfair for Lachlan and Kate, for what they\u2019re going to have to go through,\u201d Tilly\u2019s grandma, Margaret Page, said.<\/p>\n

She was terrified Tilly would suffer the same fate as Quinnton, but the world first trial had offered a glimmer of hope.<\/p>\n

Dr Smith explained the therapy works by inserting a good \u201cworking copy\u201d gene that overrides the gene that causes the degeneration.<\/p>\n

What happens next though, good or bad, is impossible to predict, with Mr and Mrs Page then left in an agonising waiting game.<\/p>\n

To everyone\u2019s amazement and joy, Tilly\u2019s dementia never had a chance to dig its ugly claws in.<\/p>\n

\u201cIn Tilly, dementia has not even eventuated. There was no evidence in Tilly, because of the time she was treated, that she even progressed to any cognitive deficit to any dementia at all,\u201d Dr Smith said.<\/p>\n

\u201cTilly kept hitting marks that children without the condition would keep hitting them, and that was the first stark evidence the therapy was working for her.\u201d<\/p>\n

Now, eight years later, her parents sit back and marvel at how \u201cnormal\u201d she is.<\/p>\n

\"TillyCamera IconTilly was born with childhood dementia. Credit: Unknown\/7NEWS Spotlight<\/p>\n

\u201cTilly is happy, she is full of energy, she is just normal. It\u2019s her averageness that we love the most,\u201d Mrs Page said.<\/p>\n

\u201cShe is just miraculous in her averageness.\u201d<\/p>\n

It\u2019s hoped Tilly\u2019s successful trial will open critical doors for the thousands of other children born with childhood dementia and help researchers unlock the key in finding a cure for dementia in adults.<\/p>\n

In the meantime though, the treatment is not available and its expected it could be several years before its accessible to people who desperately need it.<\/p>\n

Experts speculate that one day, a vaccine could be available at birth to stamp out dementia entirely.<\/p>\n","protected":false},"excerpt":{"rendered":"Nine-year-old Perth girl Tilly is like any other child her age \u2014 with an interest in everything from…\n","protected":false},"author":2,"featured_media":599722,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[134,527,1260,111,43,139,69],"class_list":["post-599721","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-health","tag-healthcare","tag-human-interest","tag-new-zealand","tag-news","tag-newzealand","tag-nz"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/599721","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=599721"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/599721\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/599722"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=599721"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=599721"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=599721"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}