A community comes together to raise money for a 12-year-old boy and his family after he goes from active and happy to suddenly paralyzed and unable to speak. (Brennon Baker)
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REXBURG, Idaho — A community comes together to raise money for a 12-year-old boy and his family after he went from 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 being outdoors, says his father Brennon Baker. He enjoys cycling, jumping on the trampoline and skiing. He is the second oldest and has four siblings.
A life is changed
In late March, Milo’s life began to change when he fell ill with mono, which includes symptoms of fatigue, fever, rashes and swollen glands.
“The whole month of April he was just really, really sick. It kind of zapped all of his energy. He was struggling in school,” Baker said. “He just never got better.”
Baker told EastIdahoNews that he and his wife Hillaree took Milo to the doctor several times and said he kept getting worse. Milo didn’t complain too much because it’s not his character.
Milo started walking differently. Baker said he looked like he had a hitch in his step. He would be so exhausted and fall asleep at 6 p.m. Then, Baker noticed that Milo was starting to rock from side to side instead of standing up straight.
Guillain Barre syndrome
In May, Baker and his wife Hillaree took Milo to the Eastern Idaho Regional Medical Center, where several tests were performed.
“They diagnosed him with Guillain-Barré syndrome. Within three days he was practically completely paralyzed,” Baker said.
Guillain-Barré syndrome is a condition in which the immune system attacks the nerves. The condition can be triggered by an acute bacterial or viral infection. Paralysis may occur. It’s a rare condition, according to the Mayo Clinic.
“I’m looking at pictures on my phone – a few weeks ago he could do a standing back flip on the ground. He’s athletic and fit. The first two weeks were so traumatic for us,” Baker said. “He’s gone from very healthy to an upsetting state for us. I remember sobbing for 45 minutes and you just can’t watch him go through that.”
Soon Milo was unable to eat properly and was put on a feeding tube.
“Every day he was getting worse and worse. He was in chronic pain,” Baker said. “He just moaned all day. Hours and hours. He was like that for several weeks.”
Doctors also discovered inflammation of Milo’s brainstem, which the doctors said was not typical of Guillain-Barré syndrome.
Air transport to primary children’s hospital
Nothing was going better for Milo. In June, he was airlifted to Children’s Primary Hospital in Salt Lake City. Doctors discovered additional inflammation in his spinal cord.
“It is most likely a variant of Guillain-Barré syndrome. It has additional features that are not usually present in Guillain-Barré syndrome. But it has overlapping features. We call it a variant of Guillain-Barré syndrome,” said Dr. Gary Nelson, a pediatric neurologist at the University of Utah Health and Intermountain Primary Children’s Hospital.
Nelson said Milo’s case was not something common for kids, but mentioned that Milo was making significant improvements.
“He’s been just a soldier through it all,” Nelson said. “It’s hard to say whether he will make a full recovery. We expect his recovery to take much longer than the time he will be in hospital.”
According to Nelson, Milo may encounter challenges throughout his life.
Slowly but surely, Milo made some progress.
“He just started smiling recently, which totally blew our minds. 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 were encouraged by his signs of emotion. He is slowly improving 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 have started moving,” Baker said. “He started riding a three-wheeled bike. He pedaled and drove through the halls of the hospital.”
Milo is currently in a wheelchair, and Baker said that when Milo is in therapy, he works very hard. He is positive and determined.
Baker thinks his son will get better and Milo aims to go skiing in the winter.
“We have to have optimism and hope. I think he can take a good shot at it,” he said.
Friends and neighbors of the Baker family do what they can to help Milo and his family.
Baker and Hillaree made countless trips to Salt Lake City from Rexburg to spend time with Milo in the hospital and with their other young children.
“We’ve probably already done 10,000 miles with our cars going back and forth between Salt Lake with two round-trip vehicles twice a week,” Baker said.
That’s why people step 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 Bobcat Stadium in Rexburg from 6:00 p.m. to 8:30 p.m.
“We would love to help them (financially). We’ve seen them come and go and try to travel. We wanted to help ease the financial burden, but also lift their spirits. I think they would need a shot. thumbs up,” said Jessica Rydalch, who neighbors the Baker family and helps with fundraising.
The fun 5K run and walk is $10 per person and $30 per family. It includes race medals and prizes for the winners. There is also a cornhole tournament which costs $20 per team. There will be hot dogs, fries and drinks.
“I think it’s going to be a fun night. There’s something for everyone. 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 often played with Milo, so fundraising is something she hopes to help.
“It’s been heartbreaking just because I’m watching my 12 year old son and they (Milo and Austin) have been riding bikes, playing night games and going together. Milo has been at my house. To watch this little boy which is just like mine can’t move or talk and mine is still fine, it makes my heart sick and sad for their family,” Rydalch said.
Austin went to see Milo when he was at EIRMC in Idaho Falls. When he left with his mother, he collapsed.
“My son would just collapse because his friend, who was a normal, happy kid, is now lying in a hospital bed. It just makes your heart ache,” Rydalch said.
She encourages the community to come out and support Milo on Wednesday. For more information on this fundraiser*, visit milesformilo.org.
As for Baker and his family, they are very grateful to the community that helps them and Milo.
“We feel an outpouring of love and support. It seems like it’s never-ending,” Baker said. “I think it could be really encouraging for Milo to see the community rally around him (at the 5k).”
*KSL.com does not guarantee that money deposited in the account will be applied for the benefit of the persons designated as beneficiaries. If you are considering a deposit into the Account, you should consult your own advisers and proceed otherwise at your own risk.