Friday, October 15, 2004

Rare disease strikes promising guitarist

Tyler Shelly benefit set for Oct. 23

Express Staff Writer

Tyler Shelly

Tyler Shelly, 20, is a guitarist, a Hailey native, a brother, son and friend. Shelly also has a rare and often-undiagnosed disease called primary pulmonary hypertension, which constricts arteries in the lungs.

A benefit event is being held, Saturday, Oct. 23 at the nexStage Theatre in Ketchum to help defray mounting medical and housing costs for the family. Shelly remains in an induced coma in Salt Lake City?s University of Utah Hospital, following an emergency lung transplant, Oct. 1.

Shelly, who graduated from the Silver Creek Alternative School in 2002, won a Sun Valley Center for the Arts Scholarship as well as a ticket to the Musician?s Institute in California. Until the disease caught up with him he had plans to attend a luthier school in British Columbia, to learn the craft of making guitars.

Though a seemingly healthy and active young man, Shelly has prior experience with medical emergency. When he was 11 years old, a passing Winnebago severed off his left hand. It was successfully reattached but he has suffered from paralysis in the pinkie, ring and middle fingers ever since. Despite this, he began taking guitar lessons only a few years later.

?I was his first guitar teacher,? valley resident Chad Stuart said. ?I became a friend and then a friend of the family?s. It kind of evolved. But he outgrew me, as a teacher.? Stuart is one half of the 1960s British pop duo, Chad & Jeremy. The pair have re-ignited their career recently and are playing a gratis concert for the benefit. Stuart said Tyler?s dedication to guitar, despite his injury, was inspiring.

?After being at the Musician?s Institute he came back playing rings around me. I would hear Tyler playing along to Marty Friedman of Megadeth. Grown-ups tend to dismiss heavy metal, but Friedman?s guitar work is amazing. He came to the school and Tyler got to play with his idol. This young man was on top of the world,? Stuart beat his fists angrily on his thighs and paused to control his emotions. ?The tragedy for Tyler was that it went so long untreated.?

The disease is often misdiagnosed and has often, as in Shelly?s case, advanced to a late stage by the time it?s accurately diagnosed.

?If you hear the sound of hoof beats, you think horses. But sometimes you hear hoof beats and along comes a zebra,? Hailey Dr. Carl Barbee told Stuart.

Stuart thinks this aptly describes the frustration for Shelly and his family. He complained of feeling out of shape, of being tired and short of breath. When treatment for allergies and asthma didn?t help, the family went to Boise for further tests. PPH has no known cause but occurs when the blood pressure to the pulmonary artery rises far above normal levels. The heart beats faster in an attempt to get blood to the lungs and enlarges as a result. In the U.S. only 500 to 1,000 cases are diagnosed each year.

In fact, recovery from PPH is not a given. If caught early there is a 50 percent survival rate. Shelly?s transplant went well but resulting complications are hurting his chances for a full recovery. When he received the healthy lung from a 20-year-old, his heart continued to over produce and essentially flooded the capillaries around the lung. In order to reduce the heart rate and heal the now damaged lung, Shelly was put into an induced coma and received treatment in which his body is cooled with ice. The subsequent slowed circulation negatively affected his left hand and the three paralyzed fingers are now in danger of being amputated. As well, the cocktail of drugs he?s been given have caused his kidneys to fail and he is now on dialysis, Stuart explained.

Alternative school principal Barge Levy went to see Shelly in Salt Lake this past week.

?He?s improving slowly but steadily. Starting with Judy and John (Tyler?s parents), there is someone with him all the time,? he reported. ?Because of the care at the hospital I think he?s got a relatively good chance. Judy won?t take no for an answer. He?s sedated now. It?s really sophisticated care.?

Shelly?s parents are Judy and John Shelly of Bellevue. She is a long time teacher at Bellevue Elementary and John works for the Forest Service in Fairfield.

?Judy is amazing,? Stuart said. ?I am staggered by how she radiates some kind of inner strength. She?s the kind of person who walks into a room and you?re glad you?re there. His sister Cassie is another heroine. She just graduated from Notre Dame University.?

Cassie and their brother Owen are with the family in Salt Lake. Friends of the family have been stunned by the turn of events.

?He is just the quietest, sweetest person with a hidden depth of intelligence, it especially showed in his musical ability and any project that he put his heart into,? former Silver Creak Alternative School teacher Joan Hudson said. ?His quiet sense of humor and his humanity really stand out for me.?

Stuart remains optimistic in the face of increasingly difficult news. ?Hopefully we?ve all got a certain spiritual core. Events like this accomplish two things: hopefully helping the family with the money and the sheer act of coming together. The trick is to not be maudlin but be optimistic in the teeth of bad news. It?s a tough thing to do. When you participate in something like this you learn to make every day count. Certainly no more whining.?

As it turns out November is National Primary Pulmonary Hypertension Awareness Month. Information and a speech by Cassie Shelly at the benefit will enhance that awareness.

The valley may feel sometimes like a small town but it has a great big healthy heart.

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