Updated: 03/25/2014 1:35 PM
Created: 03/24/2014 4:15 PM WDIO.com
Amelia Joy Baker has had to learn how to walk, twice in her young life. The Superior toddler lost the ability to, last summer.
The 2 1/2 year-old has been diagnosed with a rare and incurable disease called Opsoclonus Myoclonus, which affects one in ten million children.
Known as OMS for short, it can take away the child's ability to walk and affects their coordination. And that's how the Baker family noticed something was wrong.
"Last summer, she started having trouble walking. We thought it might be the double ear infection she had, and then something called cerebilitis. But it wasn't getting better," Lee Baker explained about her daughter's medical journey.
They eventually saw a specialist in Illinois who gave them the news about OMS. "At that point, we weren't sure what we'd get back with her, in terms of coordination and walking."
Amelia was also going through something called "rages," which is uncontrollable flailing around and screaming. "That was probably the hardest part of caring for her. We'd have to hold her so she wouldn't bite herself. She'd rage for hours, sleep for half an hour, and start all over again," Lee added.
Treatments began, and things got better. Then a double whammy. Cancer.
"Through all the scans they needed to do on her, they found a tumor. Which is common with OMS. Thankfully they got it out and the cancer had not spread," Lee said. The surgery took place in Minneapolis.
Now Amelia has had three types of treatments. One requires a hook-up to a machine at Essentia Health St. Mary's Medical Center once a month. That's where we met up with the family last week.
They have a positive outlook on things. Amelia began walking again around Christmas time. "It was the best Christmas present ever," said Harry Baker, her father. "We do worry about relapses, which usually do happen for kids with OMS. But we are hopeful that she can stay in a semi-permanent remission stage of OMS, and live a normal life."
There's a benefit for the Baker family on Sunday, March 30th, at the Billings Park Community Center. It's a spaghetti feed, silent auction, bake sale, and a few surprises. The event runs from 11am-3pm.
You can also make monetary donations to:
"Amelia Joy Baker Benefit Fund," at the National Bank of Commerce in Superior.
Special Report: Hypothermia Year-round Threat in Lake Superior
Last week we told you about signs on Park Point Beaches indicating E. coli in the water. There is another hidden danger to warn you about: hypothermia. It is an all-year problem on Lake Superior.
Park Pointers Still Frustrated with Public Access Plan
Residents of Park Point are expressing frustration again over city plans for public access to the beach through avenues near their homes.
Lightning Strike Ignites Duluth Heights Attic, Causes 35K Damage
The attic of a Duluth Heights home ignited Tuesday night after lightning struck the roof of the two-family dwelling. Firefighters said they responded to 3955 Fountaingate Drive around 8 p.m. When they arrived, they say smoke and fire was visible.
Duluth Woman Raising Money For Unpaid Maternity Leave
Nikki Bollman works at a Duluth daycare center and is expecting her first child. Her work doesn't offer paid maternity leave, so Bollman is getting creative. She created an online fundraiser for her cause. The concept is called crowdfunding and it's something that's gaining popularity.
Minimum Wage Increase Set for Friday
Some area businesses could take a hit when the state's mandatory minimum-wage increase takes effect Friday.