‘Every day we try to make the best of it’: families with children diagnosed with aging disease remain positive of a cure

Adalia is a superstar – smart, single-minded, funny; she’s one of a kind. But she’s tiny for an 11-year-old – weighing less than 7 kilograms, and just over 80 centimeters tall. She has an extremely rare condition called progeria, also known as the premature ageing disease. The average life span is just 14 years.

Adalia’s best friend and mother, Natalia, explains the condition to Sunday Night’s Steve Pennells. “It means you age eight to ten times faster than a normal person. It’s the protein progerin. Everybody has progerin in their body. Everybody ages, but [those with progeria] make it a lot.”

As Adalia’s body races against time, she’s cramming in as she can into life. For Adelia and her family – mum, dad Ryan and three younger brothers – time is precious.

“I love watching her help her brothers, teaching them lessons,” Natalia explains. “It’s kind of like an ‘aha’ thing for them, because when they get older they’re going to remember her, they’re going to remember that. That’s another reason why I record everything. I record, I take pictures, I literally capture everything.”

It wasn’t until she was three months old that doctors diagnosed Adalia with progeria.

“I didn’t look at her any differently,” says Natalia. “I had a mission, and that was taking care of her.”

For the first ten months of Adalia’s life, Natalia was a single mum. Then Ryan, an old boyfriend from high school, asked her on a date.

“That’s when I met Adalia,” Ryan recalls. “She was about 10 months, 11 months old, just staring at me in the car seat. She’s the cutest thing. I was able to help her learn how to walk, talk, potty train, go through all those things. I hadn’t had any kids of my own, and to be honest, [was] really scared to commit with Natalia because of Adalia. I didn’t want that responsibility. I didn’t want to screw it up.”

Adalia’s upbeat outlook is contagious. It’s one of the reasons she has so many online fans. Her videos have been watched 170 million times. She records her self being made up, dressing up, and glamming up.

But it’s dancing Adalia is really crazy about. When the music starts, she won’t let you stand by the side and watch – you have to join her.

Adalia says she loves the way dancing makes her feel. “Like a really famous, famous, super, super famous star.”

As brave and spirited as she is, Adalia’s health is extremely fragile. There are regular medical check-ups to follow the progress of the progeria. She is especially vulnerable to blood clots on her brain.

Still, Natalia and Ryan are careful not worry Adelia, choosing to keep their worries to themselves.

“It’s just really scary,” Ryan explains. You just never know what the next day is going to be like. We just try to cherish the good ones. Birthdays are a big deal to us, and every day we try to make the best of it.”

Sometimes it’s too much for Natalia. “I never show her when I’m crying. It’s always at night. I literally stay up at night and I worry about her, that she’s not going to wake up.”

While most people with progeria die in their mid-teens, Meghan Waldron is defying the odds. She’s fit, active and, so far at least, appears to have slowed down the relentless march of the premature aging disease.

At 17, Meghan is much more aware that she is living on borrowed time with progeria. Part of the reason is thanks to an experimental drug trial bringing hope to many kids with progeria.

Audrey Gordon, a director of the Progeria Research Foundation, which has been developing drug treatments for more than a decade to help Meghan and other volunteers.

“This drug helps children in many ways. It improves their bones, their hearing, but most importantly, their hearts. It makes their hearts stronger. And then just recently we learned that it actually is making them live longer as well, so it’s wonderful, modestly extending their lives.”

Already, the new drugs have extended the life expectancy of progeria sufferers by as much as one and a half years.

Meghan’s dad Bill and mum Tina are not just relying on drugs to prolong their little girl’s life – diet is also crucial.

“We are vegetarians,” Bill explains. “We eat wholegrains and organic food all the time.”

Her family also encourages lots of physical activity, and Meaghan loves to run. “[I’m] not as fast as everybody on my team, but I’m not the slowest!”

There may be one more ingredient in Meghan’s surprising longevity – the support of her friends. She was three when she met her best friend, Anáis.

“We both talk about how progeria sucks,” says Anáis. “Sometimes I just feel out of all the people in the world, my best friend, the one person that I’ve connected with on this entire planet the way that I have, and probably the only person on this planet that I ever will have a connection with like that, has progeria. It’s frustrating.”

“I just assume that she’s going to be there for every part of my life. I assume that she’ll be my bridesmaid at my wedding, that she’ll be the god-mum of my kids, that she’ll meet my kids, she’ll just be there for all of those big milestones.”

So Anáis is taking matters into her own hands. She plans to study molecular biology at university so she can find a cure to help Meaghan.

“She’s living a very long life and it’s just really amazing,” Anáis explains. “I think if there is a cure that could be found, that could be even more amazing.”

In the meantime, Meghan is busy with her own career as an author of children’s books. Her first is the story of a bird who struggled to fly.

Meghan explains why its message is so important to her. “Basically to not give up and keep going, even when you think it’s hard.”

 

Reporter: Steve Pennells

Producers: Mick O’Donnell

 

You can follow Adalia’s story on her Facebook page.

Meghan Waldron’s children’s book Running on the Wind is available now. For more details and to purchase a copy, click here.

To find out more information on progeria or to donate to help find a cure, visit

https://www.progeriaresearch.org.