#MollysKids: 16-month-old born with rare type of eye disorder

CHARLOTTE, N.C. (WBTV) - Ivy Upchurch, born on May 5, 2022, likes chewing on everything and loves listening to music and stories like many 16-month-olds.

Unlike many 16-month-olds, Ivy was born with a genetic condition called Leber Congenital Amaurosis with gene CEP290. This rare type of eye disorder causes severe vision loss, which has made Ivy blind since birth. Leber Congenital Amaurosis, also known as LCA, primarily affects the retina and is the most common cause of inherited blindness in childhood.

“It’s found in 2-3 out of every 100,000 babies,” Autumn Ashe, Ivy’s mom, said. “As of now, there’s no current treatment for Ivy’s gene mutation.”

Because 80% of what we learn is through vision, Ivy is considered to be developmentally delayed on his gross motor skills. His mom said he’s not performing age-appropriate coordinated movements like sitting, crawling, and walking. Most kids his age run, jump, and climb, but Ivy cannot yet sit on his own.

“We do have some hope though,” Autumn said. “There is a two-week program called Intensive Physical Therapy. It would allow Ivy to grow in endurance and allow his brain and body time to learn how to respond to new and challenging exercises. Unfortunately, insurance does not cover this treatment and the program is costly, so we’re working on things to try and make it happen. In the meantime, wanted you to know about Lebers Congenital Amaurosis and Ivy, in the hopes he could become part of #MollysKids.”

Autumn says the family is working hard, and staying strong, but her heart also breaks.

“I don’t like thinking about how my son will never see me or the stars in the sky,” she said. “But I do feel hope when I think of how he will experience the world in his own unique way, through his other senses.”

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