Wish list: visually impaired baby needs toys, tools to help him grow

The Enquirer and United Way of Greater Cincinnati have joined forces for the 36th year to help families in need with the Wish List program. This is the first of eight stories that will appear this month.

Xyaire Mackey, whose first birthday was in November, punctuates his days with laughter, smiles and giggles. With help from his parents, he likes to stand and bounce or rock back and forth. He enjoys hearing his father sing to him.

"A happy baby," said his mother, Iyanna Mackey, 22.

But Xyaire's good-natured temperament belies the challenges he faces.

When Xyaire was a few months old, Iyanna grew concerned that her son was not focusing on faces or objects. An ophthalmologist examined him, ordered a brain scan and delivered a disheartening diagnosis: Xyaire has underdeveloped optic nerves, for which there is no medical or surgical treatment.

He also was diagnosed with related conditions that cause abnormal eye movements and eye misalignment.

"We know he only sees light. That's the only thing he reacts to," said his father, Rickiem Dennis, 26. "We won't know how clearly he sees light and shadows until he's able to tell us."

The scan also revealed the presence of two arachnoid cysts, which are fluid-filled sacs on the brain. On Sept. 19, Xyaire underwent surgery to drain the larger of the cysts. It's unclear whether surgery will be needed for the smaller cyst.

Xyaire has other health issues, including adrenal insufficiency and sodium imbalance. He takes seven medications a day.

The family was referred to the nonprofit Cincinnati Association for the Blind & Visually Impaired, which nominated Xyaire for the Wish List. Sheila Boggs, one of the agency's early intervention vision specialists, is working with Xyaire and his parents.

"For babies with visual impairments, their world is here," she said, holding her hands a few inches from her face. "He can and wants to move and put his hands out there to explore. He can't see, so he's doing it on faith that mom and dad are providing fun things for him and a safe environment for him."

To help Xyaire explore, learn, interact with his environment and develop to his fullest, the association recommends items that include a high chair to support his head and body; an adaptive seating system that provides support in a variety of sitting positions; a stroller; foam mats for safe play; an early intervention therapy kit; and a variety of adapted toys. The toys will encourage Xyaire to use his other senses and will assist in developing his gross and fine motor skills.

Xyaire's parents cannot afford those items. Xyaire's father works as a concierge at Kroger headquarters. His mother has not worked recently due to hip and back problems and is due to deliver their second child this month.

As she ponders her son's future, Xyaire's mother said, "I just hope he has the best life he can have."

His father remains upbeat, expecting his son to lead a full life, as many people with disabilities do.

"I don't think about the negative too much, especially because of how positive Xyaire is. I just believe in him. I know he's going to get through this."

Xyaire's wish: Items that will help a vision-impaired child to develop to his fullest, including a high chair, adaptive seating system, stroller, mats, therapy kit and adapted toys.

Estimated cost: $4,711.47

Donations can be made online at www.uwgc.org/wishlist. You can also mail donations to: United Way of Greater Cincinnati, Attn: Wish List Pledge Processing, P.O. Box 632840, Cincinnati, OH 45263-2840. Please include "Wish List" in the memo line on checks.

John Johnston is the content writer at United Way and a former Enquirer reporter.