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REXBURG, Idaho — A community is rallying together to raise funds for a 12-year-old boy and his family after he went from being active and happy to suddenly paralyzed and unable to speak.
Milo Baker lives in Rexburg, Idaho, and was once a very active kid. Milo loves to be outdoors, his father Brennon Baker says. He likes to ride bikes, jump on the trampoline and ski. He is the second oldest and has four siblings.
A life is changed
At the end of March, Milo's life began to change when he got sick with mono, which includes symptoms of fatigue, fever, rash and swollen glands.
"The whole month of April, he was just really, really sick. It kind of zapped him of all of his energy. He was struggling in school," said Baker. "He just never got better."
Baker told EastIdahoNews that he and his wife Hillaree took Milo to the doctor multiple times and said he kept getting worse. Milo didn't complain too much because it's not his character.
Milo began to walk differently. Baker said it looked like he had a hitch in his step. He would be so exhausted and would fall asleep at 6 p.m. Then, Baker noticed Milo began to sway side to side instead of standing straight.
Guillain-Barré syndrome
In May, Baker and his wife Hillaree took Milo to Eastern Idaho Regional Medical Center, where several tests were run.
"They gave him the diagnosis of Guillain-Barré syndrome. Within three days, he had pretty much become completely paralyzed," said Baker.
Guillain-Barré syndrome is a condition where the immune system attacks the nerves. The condition can be triggered by an acute bacterial or viral infection. Paralysis can occur. It's a rare disorder, according to the Mayo Clinic.
"I'm looking at pictures on my phone — just weeks before, he could do a standing backflip on the ground. He's athletic and fit. The first two weeks were so traumatizing for us," said Baker. "He went from extremely healthy into the state that was earth-shattering to us. I remember sobbing for 45 minutes and just like, you can't watch him go through this."
Soon, Milo was unable to eat properly and was put on a feeding tube.
"Every day he got worse and worse. He was in chronic pain," Baker said. "He just moaned all day long. Hours and hours. Stayed in that state for several weeks."
Doctors additionally found inflammation on Milo's brainstem, which doctors said was not typical for Guillain-Barré syndrome.
Airlift to Primary Children's Hospital
Nothing was getting better for Milo. In June, he was airlifted to Primary Children's Hospital in Salt Lake City. Doctors found additional inflammation in his spinal cord.
"This is most likely a variant of Guillain-Barré syndrome. He has extra features that are not typically present in Guillain-Barré syndrome. But he does have features that overlap that. We are calling it a variant of Guillain-Barré syndrome," said Dr. Gary Nelson, a pediatric neurologist with University of Utah Health and Intermountain Primary Children's Hospital.
Nelson said Milo's case is not something common for kids to experience but mentioned Milo is making significant improvements.
"He has been just a trooper through all of this," Nelson said. "It's hard to say if he will make a full recovery. We anticipate his recovery will take much longer than how long he is in the hospital."
According to Nelson, there's a possibility that Milo will experience some lifelong challenges.
Slowly but surely, Milo has made some progress.
"He just started smiling recently, which it totally blew our mind. He had no emotion for probably five weeks," Baker explained. "The next week, he started frowning. He started crying and showing signs of sadness."
On the road to recovery
Milo's parents have been encouraged by his signs of emotion. He has been on a slow incline of getting better and is now able to open his mouth, move his tongue and speak words slowly.
"Now he can say things like, 'I love you.' It's super slurred, but he's starting to talk. All of his arms in the last two weeks are starting to move," Baker said. "He started riding on a three-wheel bike. He has been pedaling it and driving down the halls of the hospital."
Milo is currently wheelchair-bound and Baker said when Milo goes to therapy, he works really hard. He's positive and determined.
Baker believes his son will get better, and Milo has a goal to go skiing in the winter.
"We have to have optimism and hope. I think there's a good shot he can come out of this," he said.
The fundraiser
Friends and neighbors of the Baker family are doing what they can to help Milo and his family.
Baker and Hillaree have made countless trips to Salt Lake City from Rexburg to spend time with Milo in the hospital and with their other young children.
"We're probably already out 10,000 miles on our cars just running back and forth between Salt Lake with two vehicles round trip twice a week," Baker said.
That's why people are stepping in to help.
On Wednesday, there will be an event for Milo called "Miles for Milo," which will be a 5k run and walk at the Bobcat Stadium in Rexburg from 6:00 p.m. to 8:30 p.m.
"We would love to help them (financially). We have watched them come and go and try to travel. We wanted to help on the financial burden end but also boost in morale. I think they could use a boost of encouragement," said Jessica Rydalch, who is neighbors with the Baker family and helping with the fundraiser.
The 5k fun run and walk costs $10 per person and $30 per family. It includes race medals and prizes for winners. There is additionally a cornhole tournament which is $20 per team. There will be hot dogs, chips and drinks.
"I think it will be a fun night. There's something for everybody there. If they don't want to walk or run, they don't have to," she said.
Rydalch has a 12-year-old boy named Austin who has often played with Milo, so the fundraiser is something that she is hoping will help.
"It's been heart-wrenching just because I look at my 12-year-old and they (Milo and Austin) have ridden bikes, played night games, and gone places together. Milo has been in my home. To watch this little boy that's just like mine go to not being able to move or speak and mine is still okay, just makes my heart sick and sad for their family," Rydalch said.
Austin has gone to see Milo when he was at EIRMC in Idaho Falls. When he would leave with his mom, he would break down.
"My son would just fall apart because his friend, who was a normal, happy kid, is now just lying in a hospital bed. It just tugs at your heartstrings," Rydalch said.
She's encouraging the community to come out and support Milo on Wednesday. For more information on this fundraiser,* go to milesformilo.org.
As for Baker and his family, they are so grateful for the community helping them and Milo.
"We feel an outpouring of love and support. It seems like it's endless, said Baker. "I think this could be really encouraging for Milo to see the community rallying around him (at the 5k)."
*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisers and otherwise proceed at your own risk.
