Tyler Johnson celebrates Christmas in a family photo from 2007. Doctors in Steamboat Springs and Denver have been unable to diagnose the illness that caused Tyler to be airlifted to Denver last week.

Courtesy photo

Tyler Johnson celebrates Christmas in a family photo from 2007. Doctors in Steamboat Springs and Denver have been unable to diagnose the illness that caused Tyler to be airlifted to Denver last week.

Boy faces amputation

Tyler Johnson, 10, fights undiagnosed disease at The Children's Hospital

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Courtesy photo

Ten-year-old Tyler Johnson, right, enjoys a trip to the zoo in May with his sister Tehya, 8. Although doctors have said Tyler will lose five fingers on his right hand and 4 inches off both feet because of an undiagnosed illness, Tyler said he plans to continue on his school's wrestling team in the fall.

To help

Eva Dworakowski, friend of the Johnson family, set up a fund at Vectra Bank to help with medical bills related to Tyler's treatment and care. Donations can be dropped off at 2155 Resort Drive and should be made out to Tyler Johnson.

On the 'Net

For updates on Tyler's condition and more information from health officials, visit www.steamboatpilo...>

— When a healthy 10-year-old gets sick, most parents don't expect it to change the child's life forever.

But that may be the case for Tyler Johnson of Steamboat Springs.

Tyler was airlifted to The Children's Hospital in Denver on Tuesday after medical staff at Yampa Valley Medical Center was unable to diagnose his symptoms. Tyler remains undiagnosed at The Children's Hospital, though doctors told his mother, Shara Johnson, the disease that most closely resembles Tyler's symptoms is a form of meningitis called meningococcal disease. The bacterial infection takes place in the membranes surrounding the brain and spinal cord.

Medical staff told Johnson that Tyler will have at least 4 inches of his feet and all five fingers of his right hand amputated as early as this week.

"We're just so lucky that Tyler's insides are OK. It's the outside of his body that took the brunt of this," Johnson said Friday as she prepared to move Tyler out of intensive care.

Johnson said Tyler began vomiting about 5 a.m. June 23, a week ago today. She thought it might be heat exhaustion and took Tyler to the doctor that afternoon. Tests came back negative. The next day, Tyler had a temperature of 103.7, Johnson said. When the fever wouldn't break, she took him to the emergency room. Tyler developed two small rashes on his feet. The rashes spread and were diagnosed as a blood infection. Late Tuesday afternoon, Tyler was airlifted to Denver.

Upon his arrival at The Children's Hospital, Tyler's heart suddenly stopped beating. Medical staff gave him CPR and revived him as Johnson made the drive from Steamboat.

Severe symptoms

Doctors have referred Johnson to a Web site, FightMeningitis.com, for information. According to the site, about 3,000 people in the U.S. become infected with the bacteria each year. As many as one in 10 people infected die from it. A person can contract meningitis "by having close personal contact with a person who is sick with the disease," the site states. Contact with a healthy carrier - someone who carries the bacteria in their nose or throat but does not become sick - also can cause infection.

Severe swelling in the brain and spinal cord and sepsis, or blood poisoning, can lead to limb amputation, severe scarring, brain damage, hearing loss, kidney damage and more.

Early symptoms of the disease are similar to the flu and include vomiting, fever and drowsiness.

Johnson spoke to Kate Lujan with the Colorado Department of Public Health and Environment about Tyler's case last week. Lujan said Sunday that the Denver office handles all media inquiries and because Tyler's case is not considered "an emergency issue," media calls would most likely not be returned until today.

Unknown cause

Even if doctors diagnose Tyler with meningococcal disease - all tests have so far come back negative - they are not clear how or where Tyler came into contact with the bacteria. The Web site states that it can strike anyone and the disease often is associated with college students living in dormitories because of the close quarters. Sharing drinking glasses, water bottles or utensils; having irregular sleeping patterns; and being in crowded situations for a prolonged period of time also can spread the disease, according to the site.

Tyler's mother said he is very active and loves to do all the things boys his age enjoy. The week before he showed the first symptoms, Tyler participated in activities with the city of Steamboat Springs' summer camp.

Chris Wilson, director of the Steamboat Springs Parks, Open Space and Recreational Services Department, said the department is monitoring the situation, but he believes the summer camp is absolutely safe for children.

Tyler "left our camp healthy and fine. We have not been notified that he has anything that they can diagnose right now," said Wilson, who is in contact with a local doctor, the Johnson family and the Northwest Colorado Visiting Nurse Association.

Wilson said activities at the state-licensed summer camp will continue as normal this week. He said the department has a procedure in place to notify parents in the event of illnesses, such as chicken pox or measles, but he has no cause for such a notification at this time.

"We believe that the camps are safe, and we'll monitor and take whatever steps if we get notified" of a diagnosis, he said. "We've had no notification that there's any kind of problem. We're working on that until the VNA : contacts us to tell us different."

Tyler lives with his mother and 8-year-old sister, Tehya, in Fish Creek Mobile Home Park. His mother said that though the kids argue, they are inseparable. Johnson is a supervisor of admissions at the Yampa Valley Medical Center and has worked there for about five years.

Tyler is a student at Soda Creek Elementary School and plans to start fifth grade in the fall. Longtime family friend Eva Dworakowski said "Tyler is very much the big brother," and described him as a very proud and brave little boy. She said during her four-hour visit to The Children's Hospital, she didn't hear Tyler complain even once.

"Tyler was on a wrestling team for the last three years," Shara Johnson said. "He loves to wrestle."

Tyler opened his eyes on his hospital bed Friday to correct his mother, saying that he still is on the wrestling team and plans to go back in the fall.

Comments

paststudent 5 years, 9 months ago

How heartbreaking. He is a very brave little boy. My heart goes out to him and his family. I hope they find the reason this happened.

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okiegal 5 years, 9 months ago

thanks local1.

shara is a great mom and the kids are so wonderful.

i hope we can all give a little to shara

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local1 5 years, 9 months ago

Just to let our community know. Shara is a single mom to Tyler and Tehya. The hospital bills are going to be out of this world for her. There is a account set up at Vectra bank under Shara & Tyler Johson for people to donate funds for these expenses. Shara is a wonderful mom and works very very hard to support her two children. Her kids mean the absolute world to her! Both kids are jems and a joy to be around. I've had the pleasure of being around this family for the last few years through 4H. Tyler is in shooting sports and Tehya is a cloverbud. Our prayers are with this family!

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Steamboatmom1 5 years, 9 months ago

Shara, Our thoughts and prayers are with you all. May Yahweh Bless you and keep you all in His care. And May He help the doctors to find out what is wrong and heal your son. I pray that this community can come together to help you in this time of need.

Tyler,

Keep up the fight, We are all hanging in there for you. You will be on that wresteling team soon. You are a great kid. Teyha, We are all pulling for your brother. And we pray for you too to have strength. Continue loving your brother and encouraging him through this rough time. As we all pray for the best for you all. Take care

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kimmy 5 years, 9 months ago

Shara, my heart goes out to you. My son was 11 years old when he was diagnosed with meningococcal. It took Childrens hospital 5 days to figure it out, they took great care of him. He is now 21 and has had no problems since. I hope the outcome is the same for Tyler.

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exduffer 5 years, 9 months ago

Being a neighbor of theirs and having a young one myself I was very concerned about his health and the possibility of transmission. I talked to my brother first thing this morning (one of the nations leading pediatric intensivists) and he assured me there is nothing to worry about as far as the health of non family members. Prolonged contact (3+ hours) or the exchange of saliva is the most probable transmisson route. His explanation for the difficulty in diagnosing the problem is that Tyler was probably given high doses of antibiotics that killed the bacteria before an accurate diagnosis could be made. Our hearts go out to Tyler and his family and we hope to see you back home soon.

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camiw 5 years, 9 months ago

Shara, It broke my heart to hear what your family is going through. You will be in my prayers and I wish nothing but the best for you all.

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sledsteamboat 5 years, 9 months ago

The Steamboat Wrestling Club would like to let the community know we will be hosting a fundraiser for Tyler and his family on Saturday July 19th at Sears in Steamboat. We will be selling hotdogs and refreshments around lunch time. All the money made will go to the Johnson Family. Get well soon Tyler we miss you!

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