Sunscreen and sunglasses help protect Sarah and Riley Wheaton's skin and eyes when they're outside. Here, the children are pictured with their parents David Wheaton and Michele Moylan.
Showing their gratitude
Grateful family gives monetary gift to International Albinism Center at the University of Minnesota
By Faith Adams
June 22, 2007
The morning after their son was born nine years ago, Michele Moylan and David Wheaton learned that little Riley had albinism.
It wasn't apparent to them right away. In fact, they had no idea Riley had albinism until their pediatrician came to the hospital to do a standard baby check the next day and noticed that Riley had white eyelashes and no pigment in his eyes.
Later that day, word of Riley's birth reached Richard King, a University of Minnesota geneticist and international expert in albinism, while he was driving home from work. King turned around and found his way to Riley's hospital room, where he shared helpful, honest, and encouraging information with the new parents.
King and C. Gail Summers, an ophthalmology professor, direct the renowned International Albinism Center at the University. They see patients from as far away as Singapore.
The impact of albinismWhen King visited Riley and his parents in the hospital, "he gave us more information about albinism in a half-hour than most parents get in the first 10 years of their child's life," says Wheaton. "He told us Riley was going to have a happy, healthy life. He told us he has patients who are doctors, lawyers, engineers, and accountants. He was very matter-of-fact but clearly empathetic."
Later, Summers confirmed that Riley had no melanin pigment in his eyes. She told Wheaton and Moylan that their son's vision would slowly improve, but it would likely never be completely normal. However, with adaptation, Summers told them, Riley should be able to perform well in educational, social, and vocational settings.
Albinism is an often misunderstood and underdiagnosed condition. Many people think of albinism as being associated with the skin and hair because the absence of pigmentation--the pale skin and white hair--is often the most distinguishing physical characteristic. (see sidebar)
In the United States, about one in 17,000 people has albinism, an inherited condition in which an altered recessive gene prevents the body from producing the usual amounts of a pigment called melanin.
There are many types of albinism. People with albinism have little or no pigment in their eyes, and sometimes in their skin and hair, as well.
Most children with albinism are born to parents who have normal hair and eye color for their racial and ethnic backgrounds. After one child is diagnosed with albinism, each of his or her siblings has a 1-in-4 chance of having the same diagnosis.
Albinism may cause reduced vision, sensitivity to bright light, jittery eye movements, or misalignment of the eyes. Vision can range from normal to legal blindness.
But Summers notes that for most people with albinism, reduced vision is the most challenging aspect of daily life.
Wheaton and Moylan agree but say that working with Summers throughout the years has made all the difference in their children's lives. (Sarah, who was born 18 months after Riley, also has albinism.)
"[Summers'] kind and gentle demeanor--overlaid with her technical competence and no-nonsense approach--has helped us through the difficult exams," Moylan says. "Her patience and willingness to explain things to our kids and to us was especially important in the early years when we were feeling raw and confused."
Sunscreen, hats, and clothing can protect the skin, but currently nothing can be done to correct the area of the retina, called the fovea, that does not develop properly in utero and in infancy--likely because melanin pigment is deficient, Summers says.
Giving back to researchSeveral years ago, Wheaton and Moylan received a substantial monetary gift from Wheaton's parents. They generously gave that money to the University's International Albinism Center for research.
"We wanted our gift to have as broad a reach as possible," says Wheaton, "and we wanted to let the researchers and the people on the ground direct the funding, to allow them the flexibility to respond to opportunities that might arise."
Summers is currently using part of the unrestricted gift for a pilot study on driving performance in people with albinism--a significant issue for many with the condition. The University's Department of Mechanical Engineering is providing a driving simulator for the study.
"Having this data in hand will give me so much more to go on when patients and their families ask me about driving," explains Summers, who is well-known for her clinical research on albinism. "Driving is so essential in our society."
U researcher Gail Summers is studying driving performance in people with albinism.
Summers hopes the study will garner enough information to secure funding for a subsequent larger study.
"Without the family's generosity, we wouldn't be able to do this project," she says.
Adapting to everyday life
For Riley, age 9, and Sarah, age 8, having reduced vision means that they sit in the front of the classroom to see the board during math class. They may not always see the ball during gym class or recess, and sometimes they end up getting hit in the face by a ball as a result.
Both children excel in school, love to read, enjoy the theater, and have impressive vocabularies for their ages. They ride bikes and competed on a swim team last summer.
When asked what it's like to have albinism, Riley says: "Well, I've never had it any other way. What's different for us? Large print books, mostly. Just bigger words."