Superior Toddler Battles Rare Disease

SUPERIOR – Two and a half year old Amelia Joy Baker is as cute as a button.Judging by her cheetah print glittery shoes, you can tell she’s a spunky, pint-sized diva. "She's a pretty happy girl and has a funny sense of humor," said Amelia’s mother, Lee Sandok Baker. She was born perfectly healthy, growing up just fine until about two weeks before her second birthday. "We noticed she was getting a little clumsy," said Lee. One day she woke up and couldn’t walk. "We'd put her on the couch and she's like 'daddy I wanna walk' and I'm like there was one day I just broke down," said Amelia’s father, Harry Baker. Amelia’s parents took her to the hospital. Doctors believed her clumsiness was happening because of a double ear infection so she was prescribed antibiotics. But over time Amelia did not improve prompting a trip to the emergency room and weeks of testing, scans and examinations. “And they didn't find anything," said Lee.Amelia also began throwing up and having uncontrollable muscle movements also known as rages."It's awful. She would wail and flail her arms,” said Lee. They would last for hours and sometimes get violent. "She progressed to where she was biting she would bite us," said Lee. That's when Amelia’s doctor knew she might be dealing with more than just an ear infection. "He said it very could be this very rare disease called Opsoclonus Myoclonus syndrome," said Lee. It's so rare that Opsoclonus Myoclonus, also known as O.M.S., only affects one in 10 million children. It causes fine motor skills, speech, vision and balance impairments."O.M.S. is actually an autoimmune disease where her own antibodies are attacking the proteins in the lining of her brain and the proteins in her spinal fluid," said Lee. From Duluth, the couple took Amelia to an O.M.S. specialist in Ilinois. After extensive testing and observations, she was diagnosed with moderate to severe O.M.S. which currently has no cure."Kind of in disbelief,” said Lee. “Yea a little bit,” said Harry. "It's like where do we go from here?" From there they went back to Duluth. While treating the disease, doctors delivered another string of bad news. They discovered a golf ball sized tumor in her abdomen."And that basically is what caused the O.M.S.," said Harry. Inside the tumor they found cancer."That was a point where I kind of broke down cause yea we weren't really expecting that," said Lee. Thankfully the cancer didn’t spread.It was removed and Amelia began aggressive treatment. She now has to take almost daily shots of steroids and receive IVIG treatments once a month. "To kind of whip her immune system into shape and override those confused antibodies," said Lee. Amelia also has to spend six months in isolation to avoid viruses that could cause the O.M.S. to relapse. So far, she is responding well to her treatment and walking again. How the disease will affect her long term is still unknown, but her parents remain optimistic."It's been a long road to get to this point so we're just hoping she stays healthy and symptom free," said Lee."She's a tough kid a very, very tough kid," said Harry. Their wish is that Amelia's story and journey will create more awareness and hope for others who will fight the same battle. A benefit for Amelia is happening Sunday, March 30 which includes a spaghetti dinner, bake sale, and silent auction. It’s taking place at the Billings Park Civic Center from 11:00 a.m. to 3:00 p.m..