Nathaniel Schmidt, 21⁄2 years old, relaxes with his mom Misty and sister Izaballa, 4, at home. Nathaniel has the genetic disorder albinism, that affects his sight and makes his skin more sensitive to light. (Lorri Sughroue/McCook Daily Gazette) [Click to enlarge]

And that's the problem.

"He looks like a normal little boy and that makes it difficult when you try to explain he has a medical condition," said his mother, Misty Schmidt of McCook.

Misty and Aaron Schmidt's son, Nathaniel, has a genetic disorder called albinism, where a lack of pigment that usually gives color to the skin and hair is not present. The common myth of the disorder is that it means red eyes and white hair but in fact, the condition comes in varying degrees and types.

Much less common is oculocutaneous albinism, what Nathaniel has been diagnosed with. The condition is characterized by abnormal flickering eye movements, vision problems and skin sensitivity to bright light. While it affects primarily the eyes, the skin and hair color may be the same color or slightly lighter than that of other family members.

Because his condition is not readily apparent, this sometimes leads to problems, such as in July when Schmidt refused to remove her son's shirt at the city pool.

Pool policy prohibits T shirts and cutoffs at the pool and Schmidt ended up leaving the pool.

"That's the hardest part, when people don't believe he has special needs," she said.

The situation was worked out and pool staff purchased a special swim shirt for her child, but Misty still attended the Aug. 4 city council meeting to explain the situation.

"That's what parents do, protect their children. If I don't protect my children, who will?" she said.

By the time Nathaniel was four months old, she and her husband noticed some things about their new baby that were unfamiliar. He rarely opened his eyes and when he did, the pupils were unable to hold still, moving rapidly from side to side.

After a battery of genetic tests, MRIs, EKGs and eye tests, Nathaniel was diagnosed with the disorder and the family began to learn how to adapt to his condition.

This meant lots of clothing and sunscreen. Until he was 18 months, Nathaniel was completely covered up when he went outdoors, she said, with long sleeves, pants, a cap and lots of sunscreen, including on his scalp.

Consequently, "We didn't go out much unless it was in the evening," Misty said."It made for a long day."

He also wore specially-fitted eye glasses to help his vision and at a year old, the family visited the National Albinism Clinic in Minnesota, where Nathaniel's eyes were studied more thoroughly and he was diagnosed as being legally blind, Schmidt said.

Since then, Nathaniel has been working with several agencies, including the Commission for the Blind, where he's being taught mobility and orientation skills and is learning how to use a cane. Although he can see some things up close, his vision is blurry and it's unknown at this point how much his eyesight will deteriorate in the future.

To that end, Misty is learning Braille in case Nathaniel's vision worsens. That way, she'll be able to teach him an an alternative way to read, she said.

"If he wakes up someday and can't see, I want him to be ready for that. What kind of parent would I be if I didn't prepare my child for his future?" she said.

Schmidt admitted she can appear aggressive when it comes to securing services for her child, especially since he seems like a typical rambunctious toddler.

"I've been told I'm edgy," she laughed. "I don't care if you don't like me, just let me get the help my kid needs."