Anastasia Toropova describes her six-year-old daughter, Alice as "An absolutely awesome and amazing girl. She's super smiley and super loveable."

You can hear the love, the hope and the worry in Anastasia's voice when talking about her daughter. 

Alice has an extremely rare and progressive disorder called Beta-propeller protein-associated neurodegeneration (BPAN syndrome) that damages the nervous system by causing a buildup of iron in the brain. 

Alice has approximately 50 to 100 seizures per day and suffers from five different types of seizures.  

She has constant medical appointments which require her to travel to the Alberta Children's Hospital in Calgary. 

Toropova says getting Alice to her appointments, which are on average three times per week, are becoming more and more difficult everyday. 

Each trip she needs to remove Alice from her wheelchair and into a car seat. She then takes apart and packs up the wheel chair for each trip so it'll fit into her small SUV. 

A process that is becoming increasingly more difficult as Alice continues to grow and lose her balance and mobility. 

It's not only a safety hazard for Alice but it's also wreaking havoc on Anastasia, who is the sole caregiver for Alice as well as her four-year-old daughter Adeline.

Toropova says everyday becomes harder as she watches her daughter's health deteriorate. 

She says Alice is "Not able to say if she's hungry or if she's pain, I know she's always in pain. We're working with the pain team really closely at the Children's Hospital."

"It's hard for her and it's hard for me to see that I can't do anything for her because there is no cure or no treatment."

Transporting Alice is Toropova's biggest challenge right now because of the frequency of the medical appointments.

gofundme page has been set up to help aid the family to purchase an accessible vehicle to make getting around run smoother. 

Toropova says they've lived in Cochrane for two years now and have hardly had the opportunity to get out and explore the area.

She wants Alice to be safe and comfortable on the road.

"She can go outside and see other places, right now we're really trapped in the house. I'm scared to drive with her somewhere else because of her safety and comfort. I really want her to see Alberta because it's really beautiful, I've been here two years and I've barely seen anything."