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.
Charge Against Superior Woman in Controversial Arrest Video Dismissed
A judge has dismissed a charge against a woman seen in a video of a controversial Superior arrest. At a hearing Friday, Judge Kelly Thimm approved a motion to dismiss a misdemeanor disorderly conduct charge against Natasha Lancour.
Three Attempted Murder Charges Filed Against Woman in Douglas Co. Shootout
Twenty two-year old Jessica Gehl of Lake Nebagamon was charged with three counts of attempted first degree intentional murder Friday after she allegedly pulled a gun on her mother and then opened fire on authorities Wednesday. Gehl was also charged with first-degree recklessly endangering safety.
Reinert 'Strongly Considering' Running for Duluth Mayor
When Duluth Mayor Don Ness announced earlier this month that he would not seek re-election, many people were surprised. On Friday, Sen. Roger Reinert said he is strongly considering entering the race.
Dayton, Johnson Show Fire in Final Governor Debate
Democratic Gov. Mark Dayton and Republican nominee Jeff Johnson ended their series of debates Friday much like they began, with the incumbent hailing big-picture successes and his rival saying too many things went awry over the past four years.
KSTP/SurveyUSA: Health Care, Taxes Most Important to Voters
When it comes to making choices for political candidates on Election Day, Minnesota voters say health care and taxes are the issues most important to them.