Geelong mother opens up about rare inherited disease

  • Leah Alstin was diagnosed with Friedreich’s ataxia when she was 17 years old
  • The rare inherited disease progressively damages the nervous system 
  • Symptoms have become worse as she’s become older, must now use walker
  • But Leah is hoping to raise awareness with a new social media campaign  

As her two children learned to walk, Leah Alstin, from Geelong, Victoria, was too scared to take them alone to the park. 

The 33-year-old had was terrified that Milla and Chad, now aged seven and five, would get out of their prams and run away – and that she wouldn’t be able to catch them.

This is due to Leah’s Friedreich’s ataxia, a rare inherited disease that progressively damages the nervous system.

One of the first symptoms of the disease is poor coordination, something Leah noticed as a 17-year-old struggling to climb the steps of her high school.

Speaking to Daily Mail Australia, Leah said both she and her mother had thought it was originally was an ear infection.

Leah Alstin (pictured with her husband and children Milla, seven, and five-year-old Chad) suffers from Friedreich's ataxia, a rare inherited disease that  damages the nervous system

Leah Alstin (pictured with her husband and children Milla, seven, and five-year-old Chad) suffers from Friedreich’s ataxia, a rare inherited disease that damages the nervous system

The first symptoms are poor coordination, something Leah noticed as a 17-year-old struggling to climb the steps of her high school

The first symptoms are poor coordination, something Leah noticed as a 17-year-old struggling to climb the steps of her high school

But they were shocked when her tests came back and and she was diagnosed with FA. 

At first, FA didn’t have a huge impact on Leah’s life. She went to university in Geelong, where she met her husband and eventually settled down. 

But as she got older, the symptoms of the progressive disease only became worse.

Four years ago, Leah broke her ankle and had to spend three weeks in a Melbourne hospital where she lost all of her muscle tone.

It was then that Leah realised she would have to start using a walking frame for assistance, a fact that was difficult for Leah to accept.

‘I felt like I lost some of my independence and I also felt a little bit insecure and self-conscious that people would stare at me and make up their own assumptions as to why I use a walking frame,’ she explained. 

It also made Leah second-guess her ability to be a good mum.

‘It’s my job to look after my kids and be strong for them,’ she said. 

The condition has become worse with age, and Leah used to avoid taking her children to the park because she was worried they would run away and she wouldn't be able to catch them

The condition has become worse with age, and Leah used to avoid taking her children to the park because she was worried they would run away and she wouldn’t be able to catch them

Now Leah uses a walking frame both inside and outside the house so that she can continue being around her friends and family wherever they go 

Now Leah uses a walking frame both inside and outside the house so that she can continue being around her friends and family wherever they go 

‘So, in the beginning, I felt – “Well, if I need help as well, how am I going to look after them?”. 

‘I was scared it would make me feel like less of a mum, less of a wife and less of a person.’ 

Leah was able to disguise her need for the frame when her children were still using prams, but as they got older she found herself avoiding the outside world. 

She would force a friend or her husband to join her on trips with Milla and Chad to the park, and avoided going shopping or to the beach.

But, thanks to the support of her family and friends, Leah said she slowly learned an important lesson.

‘My friends have really stuck by me and that’s made me realise it’s okay not to be okay,’ she said. 

The mother-of-two has since started her own social media campaign to get the word out about Friedreich's ataxia with the #showusyashoes movement 

The mother-of-two has since started her own social media campaign to get the word out about Friedreich’s ataxia with the #showusyashoes movement 

Leah is taking pictures of her shoes, and encouraging others to do the same with her hashtag, to help spread awareness about FA and the struggles that it comes with 

Leah is taking pictures of her shoes, and encouraging others to do the same with her hashtag, to help spread awareness about FA and the struggles that it comes with 

‘People still love me for who I am. Its taken awhile to realise that, but now I think I have.’ 

Leah also realised that when it comes to her children, she’s just like any other mum. 

‘I’m their mum, I’m who they see all the time. Even though I use a walking frame it’s normal to them,’ she said. 

‘They never really talk about how mum is unsteady on her feet. It’s just normal, and it makes me feel normal.’ 

Leah now uses a walking frame both inside and outside the house and is hoping to spread awareness to help others understand why she needs the extra help.

The mother-of-two has since started her own social media campaign to get the word out about Friedreich’s ataxia.

Leah has also been documenting her struggles on Instagram to give people a peek into what life is like with FA 

Leah has also been documenting her struggles on Instagram to give people a peek into what life is like with FA 

Leah’s campaign, titled #showusyashoes, was inspired by her love of fashionable and comfortable footwear.

She was organising her collection when the idea hit that shoes would be the perfect way to spread awareness about FA to everyone in the community. 

‘I want to appeal to everyone, not just people who might have a disease,’ she said. 

‘And I thought, well, fashion and shoes can appeal to so many – men, women, kids, students – and has such a range.’ 

Leah began taking pictures of her shoes and posting them on Instagram with the #showusyashoes hashtag as she documents her own struggles with FA.

It has inspired others to join the movement, which is now being adopted by the Friedreich’s Ataxia Research Association in the United States.

Leah is hoping that the campaign will help spread awareness and let people know that FA exists. 

‘It really helps when people know and understand what condition I’ve got…if you can stop a few stares on the street then I think that’s helped,’ she said. 

The mother-of-two hopes to spread awareness and act as a role model for her kids 

The mother-of-two hopes to spread awareness and act as a role model for her kids 

Leah also plans to speak to researchers and gene therapists on the panel at an upcoming Friedreich’s ataxia scientific symposium, where she hopes to make her condition more ‘real for them’. 

‘They’re in the scientific world and the medical world, doing all this textbook stuff,’ she said. 

‘But it’s good if they actually meet people that deal with this every day.’ 

Leah, who knows that her condition is going to get worse, is holding out hope that one day they will find a treatment or cure. 

‘The future for people with FA diagnosis is quite scary,’ she said. ‘You can lose the ability to walk, talk, hold yourself up.’ 

‘You can lose your vision, your hearing, it affects everything in the body.’ 

‘But, in comparison to some diseases, we have sometimes a little bit of time on our side.’   

Leah is hoping to spend the time she does have being a role model to her children. 

‘I want to show them that its okay to not be okay, to show emotion,’ she said. 

‘And how to deal with these setbacks in life.’  

Health | Mail Online