A Noosa girl with a rare genetic disorder has gone viral in a TikTok at the Taylor Swift Eras Tour, highlighting the importance of access and inclusion ahead of Rare Disease Day (29 February).
Daisy Doherty, 9, was instrumental in having the accessibility beach mat installed on Noosa Main Beach, and recently her mum Libby was surprised to see a video of Daisy and support worker Bianca dancing to Taylor Swift’s song on TikTok with millions of views.
“What has followed has been extraordinary. We were stopped in the street in Melbourne by people who saw us at the show or saw the video,” she said.
“We have done a follow up with USA Today and have been interviewed for an article in Italian Newspaper IL GIORNO. And the beauty of it is that we have been able to shine a light on just how well the Eras tour provided access and inclusion. In Italy, there is no such thing for persons with a disability.”
Libby said the concert at the MCG in Melbourne was the best access and inclusion that she’s seen for a major event.
“It really stood out because everything was made so easy for us,” she said.
“The hardest part was getting a ticket, like everyone else. But we had to fight for one of 20 wheelchair seats, not one of 96,000 tickets. So, we were pretty lucky to get there.
“The MCG offered us and anyone with a disability with a familiarisation tour the week before. We couldn’t attend but I thought it was amazing.
“When we arrived, we were escorted through to our seats. They put extra disability toilets near our seats. The staff had all been very-well briefed and anything we wanted to do, they made it easy for us.”
It’s the simple things that made a big difference, and Libby said Rare Disease Day was an important day to bring attention to access and inclusion for all.
“The theme behind Rare Disease Day is Show Your Stripes,” she said.
“So it comes from having a unique stripe like a zebra. It’s a time for people to show their support, ask questions, and get involved.
“That’s something I’ve struggled with because Daisy is one of three in Australia who has this condition. So we don’t have a support group. We don’t have people pushing for treatment. We didn’t have access to the NDIS for a long time because they didn’t recognise her condition. We do now, but it was a big challenge to have her condition acknowledged.”
Libby is travelling to America for a Rare Disease Day summit with all the people who have the same condition as Daisy.
“I’m really looking forward to it because it’s going to be the first time I get to meet anyone who has the same condition,” she said.
“There’s no big Pharma looking for a treatment for people like Daisy because there’s only 89 of them in the world, so they’re never going to make any money out of it. We as parents have fundraised for scientists to work on some treatments. Scientists are coming to the conference and I think we’ve raised about $180,000. It’s pretty amazing and we’re going to celebrate that.”
For information on the fundraiser visit secure.givelively.org/donate/cdg-care/finding-a-treatment-for-pign-cdg/libby-doherty
