SPARKS — Madilynn Meli was considered a “mystery child” by the doctors, said her mother, Christel Meli.

“Doctors couldn’t figure out what was wrong with her,” Meli said. “Her brain wasn’t functioning. She had seizure problems, low (muscle) tone, tremors. Her body would shake. They couldn’t figure why she was the way she was. It affected her eyesight and her hearing.”

Madilynn was partially blind. Some days she could see about 7 inches in front of her but her brain wasn’t registering what she was seeing and she couldn’t communicate with her parents.

Meli, a Sparks resident, called it a “hit and miss” situation and found it hard to find any object to comfort her or achieve success with any strategy to help with her development.

She had planned on bringing Madilynn with her to a conference in May to learn how to work with her better, but she died in April at just 19 months old.

Even without her daughter, that conference was one of the most important educational trainings Meli would receive and, she said Wednesday, many other parents of deafblind children would also benefit from its lessons.

In a presentation on Tuesday to the Sparks Greenbrae Lions, University of Nevada, Reno professor of special education MaryAnn Demchak spoke of situations like Meli’s.

In her talk with the Lions and after a viewing of a recently produced video, Demchak spoke of one of the most well-known deafblind women, Helen Keller. She said the way most people think about Keller, the first deafblind person to earn a bachelor’s degree, is inaccurate.

Demchak was appealing to the service organization’s members whose main community focus is vision.

“This is why you all do vision,” she said to the Greenbrae Lions, referring to Keller as one famous example who learned how to communicate after an illness as a baby left her deaf and blind.

Demchak is project director of the Nevada Dual Sensory Impairment Project (NDSIP), which aims to provide educational services for children and young people through age 21 who have vision and hearing impairments, the two senses through which people are most able to learn.

The project reaches out to parents of children who have lost part of either or both senses.

The child also must have additional impairments related to their cognitive, physical or orthopedic, speech, communication or language abilities.

“So many kids in the project have multiple needs that some sensory impairments get overlooked,” Demchak said. “We have to be cautious not to overload parents … and to make an effort in meeting the unique learning needs of these students.”

A recent two-day seminar at UNR was refreshing for Meli who said it would have been helpful to have her daughter there to interact with because it didn’t take place in a sit-and-listen classroom format.

“It was very hands-on, which was very enjoyable,” Meli said. “We got to interact with everyone … and we exchanged phone numbers for starting up support groups in Las Vegas and Reno.”

According to NDSIP’s website, www.unr.edu/educ/ndsip, deafblindness affects more than 12,000 children age 21 and younger in the United States and can be brought on by 70 causes.

There are states that offer services through similar projects and all are funded by the U.S. Department of Education’s Office of Special Education Programs. In the Silver State, the Nevada Department of Education also contributes. The NDSIP has received $112,000 for a five-year cycle and the project is currently in its second year. The money goes toward Demchak’s time and travels for various presentations, among other things.

Nevada originally was part of a partnership with Arizona in a multi-state contract to provide these services, Demchak said, but having its own project would allow more flexibility and would be free from following other states’ standards for special education, especially in terms of teachers earning certification.

“There are services in schools … but teachers don’t feel they have the skills to work with the deafblind,” Demchak said.

Suraj Zutshi, president of the Lions, said the presentation fell in line with the club’s mission of helping the community with vision. Inviting Demchak to be a speaker also attracted Lions from other clubs in the area.

In addition to collecting and recycling eyeglasses, the Lions Clubs International have a hearing aid recycling program to provide aids to those living on a limited income.

For Meli, who is unemployed, the project’s annual conference has motivated her. She said she may consider becoming a behavioral aide specialist in the future to help others with children like Madilynn.

“It was very beneficial … in that I could take those learning skills and apply them to my future children,” Meli said. “I would have to say (to parents) that they should not ever feel like they’re alone in this because there are a lot of people who are going through and have been going through this.

“To be able to have those learning tools, to take those opportunities and jump into it,” she continued, “I’m so happy that I went and hope I can go back in the future. It was great.”