Student to be featured at international art show

By: Elizabeth Scussel | Birmingham - Bloomfield Eagle | Published June 29, 2015

 Kacy Wyman

Kacy Wyman

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BLOOMFIELD TOWNSHIP — Kacy Wyman, 13, is a competitive swimmer and an aspiring doctor.

She has never seen herself as different.

“She really lives her life like a normal kid,” said Kacy’s mother, Jen Wyman, explaining that normal daily life currently consists of washing down nearly 50 different medications with gallons of water. “We are constantly living by the clock, but we get through it, and nothing gets her down.”

Kacy suffers from cystinosis — a rare genetic, metabolic disease that causes the amino acid cystine to accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells.

Excess cystine damages cells and often forms crystals that can build up and cause problems in many organs and tissues. The kidneys and eyes are especially vulnerable to damage, but muscles, the thyroid, the pancreas and other organs may also be affected.

Without treatment, children with cystinosis can develop end-stage kidney failure, and if it’s left untreated, it can have dire outcomes.

Kacy — who turned 13 last weekend — was diagnosed at the age of 4, but she began presenting symptoms before her first birthday.

“The main symptom was her failure to thrive — she stopped growing. She had a low phosphate level, excessive thirst and urination, dehydration, and light sensitivity,” said Jen. “We saw so many doctors. An endocrinologist did testing for a possible growth hormone deficiency. All the pieces of the puzzle were there. We just missed it for a while.”

In May, Kacy received an early birthday gift from her father — a kidney.

It’s amazing, Kacy said, that doctors can take an organ out of one person and put it into another.

“It’s gross, but it’s still pretty cool,” she said.

Cystinosis is so rare that it affects only about 500 people in the United States and less than 2,000 people worldwide.

Later this month, the Cystinosis Research Network is inviting those affected to attend its annual family conference in Chicago.

The CRN comprises families, friends and medical researchers dedicated to finding a cure, developing treatments and enhancing the quality of life for those affected by cystinosis.

This year’s event will feature the first global gathering of art created by more than 100 artists affected by cystinosis — including Kacy.

Cystinosis support groups in Brazil, Mexico, Spain and the United Kingdom will display the collection, and Chicago will serve as the first stop for the “Dream, Achieve, Inspire” display of work from artists representing 30 countries.

“In countries such as Iraq, Venezuela and Thailand, we hope to gain recognition for the patients there and make vital medicines available for the first time,” said event chair Katie Larimore, explaining that raising awareness on an international level is vital.

While the artwork to be displayed at the exhibit is top secret, Kacy divulged that she, alongside her artist grandmother, created a mixed-media work on canvas.

In addition to demonstrating their creative abilities, the artists aim to make a statement of awareness and strength for those living with cystinosis.

For more information, visit www.cystinosis.org.

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