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Teenager battling rare illness receives a dream come true

The Gehrin family: Chris, Katya, Bob and Alex.

The Gehrin family: Chris, Katya, Bob and Alex.

Fourteen-year-old Katya Gehrin went to bed with back pain on April 15, 2014. When she awoke the next morning, the St. Charles County teen was paralyzed from her shoulders to her toes.

Her parents, Bob and Chris Gehrin, rushed her to St. Louis Children’s Hospital where she was diagnosed with a very rare autoimmune, neurological illness called transverse myelitis (TM).

“Only about one to five people per million per year have an attack of TM,” Chris explained. “TM is a condition in which the body’s immune system for some unknown reason attacks the spinal cord.”

While there is no cure for TM, Chris said about one-third of patients make close to a full recovery, another one-third make a partial recovery, and the last third make no recovery at all.

“The process of recovery is a long and hard road with no guarantees, involving months to years of physical therapy,” Chris said.

Katya spent nine weeks at Children’s Hospital – spending the first week in pediatric intensive care, followed by eight weeks in neuro-rehab therapy.

“In neuro-rehab, Katya had to teach her body to move again. She had to train her arms to hold a cup and learn to feed herself,” Chris said. “She had to train her legs to stand and begin to walk again. These were certainly difficult tasks, but Katya always handled it with a positive attitude and determination … she made tremendous progress.”

Katya, who was in eighth grade at the time, completed her schoolwork from her hospital bed. In late June, she was released from the hospital and was able to return home.

“At that time, she still needed the aid of a wheelchair. Through the summer months, Katya continued to work hard at outpatient therapy, progressing to using a walker and eventually (gaining) the ability to walk on her own,” Chris said.

With August came the beginning of freshman year at Francis Howell High and continued intensive therapy after school.

“It was a very exhausting schedule, but Katya loved her school and continued to gain strength and stability with therapy,” Chris said.

While the likelihood of Katya having another TM attack is unknown, Chris said doctors think it is unlikely.

“However, since TM is so rare, there has not been much research on this illness,” Chris said. “It is hard to predict the prognosis.”

Katya is walking again, but not as fast or as stable as before the illness. She wears a brace on her left leg because of weakness.

“One area of movement that has not come back at all is Katya’s triceps, which prevents her from straightening her arms at the elbow when raising them up. We are investigating nerve transfer surgery in which some of Katya’s working nerves would be used as ‘donors’ and transferred to the triceps to regain movement,” Chris said. “We are awaiting the opinion of a leading Washington University specialist to find out if Katya would be a candidate for this procedure.”

Katya’s finger movement also is limited, which makes many daily tasks difficult for her. She has had some improvement in this area, but it has been very slow.

While Katya was in the hospital, an application for a wish on her behalf – a trip to Hawaii – was submitted to the Make-A-Wish Foundation of Missouri. Last November, her wish was granted in grand fashion when Katya was surprised with the news at the Francis Howell High district playoff football game.

During half-time, the Francis Howell cheerleaders escorted her to the front of the stadium with her back to the field. The band provided the drumroll as the cheerleaders turned Katya to face her friends on the field who were holding a banner which read, ‘Katya, you’re going to Hawaii.’

“Needless to say, Katya stood in amazement as the stadium erupted with cheers of joy,” Chris said.

“Katya was then escorted down to the field where she was greeted by the wish granters who adorned her with Hawaiian leis and presented her with the certificate … her wish no longer was just a dream, it was going to become a reality,” he said.

“It was amazing,” Katya added.

Katya, her parents and older brother, Alex, plan to take the dream trip to Hawaii near the end of 2015.

“Katya usually has a smile on her face, but now she is literally beaming,” Chris said. “We are so grateful to the Make-A-Wish Foundation for granting Katya’s wish and thankful to Francis Howell and Katya’s friends and supporters for helping with the wish reveal.”

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