Boundless Spirit

Nowhere on the planet will you find a kid with more artistic passion, talent, and energy than Chloe Lanteigne-Morrow.  She’s acting in two productions at her local community theater, and at the same time, performing with a traveling theater company. She studies both classical and Irish music on the violin, and sings in a local honors choir. Perhaps most impressively, she won first place in an Irish dance competition, which qualified her for the 2010 World Irish Open Championships in Dublin, Ireland.

Oh, and in her spare time, Chloe is a prolific fiction writer — she recently finished her third full-length book. Her mom, Holly, says, “She’d write all day if I let her. She just loves it.”

Chloe Lanteigne-Morrow

Holly is thrilled that her daughter is so active and fearless despite significant vision loss from retinitis pigmentosa (RP). She also credits Chloe’s twin sister, Elise, their friends, and other adults in their community for being there when Chloe needs help. “Chloe won’t let things get her down, and she gets a lot of help from both adults and her friends. I am impressed with how the kids really step up for her, and they do it happily.”

Holly says that Chloe’s big visual challenges are in dark settings, such as the blackouts during theater set changes, and when she’s dancing and needs to watch the performers on her periphery so she can stay in time. But thanks to her courage and the trust she has in others who are there to help, Chloe copes incredibly well with her visual limitations.

It was actually during the scene change of a dance production nearly five years ago when Holly realized that something was unmistakably wrong with Chloe’s vision. “When the curtain closed, there was just enough light from a little red bulb so the dancers who just finished could run off and the new dancers could run on. So kids were flying on and off the stage in between dances, but Chloe just stood there like a statue, completely frozen. She couldn’t see a thing. It was such a stark contrast between her and all the kids zooming by. I knew something was wrong.”

After visits to an optometrist and two retinal specialists, Chloe was diagnosed with RP. Holly recalls being horrified by the grim prognosis the second specialist gave her daughter. “He told us that we should not have any hope for a cure or a treatment in her lifetime. Chloe was sitting right there.”

But Holly had already collected several research articles on promising, emerging treatments from the Foundation’s web site, so she was determined to find a doctor with a more positive outlook for Chloe’s vision. Holly knew there was real hope for a cure.

Chloe with her parents and twin sister Elise

Shortly thereafter, Holly attended a half-day Vision Seminar in Philadelphia, hosted by the Foundation, where she heard Drs. Eric Pierce and Jean Bennett talk about the extraordinary progress in research being made on a number of fronts. “I thought, ‘These people really know what they are doing and are getting awesome results.’ After the seminar, I made a beeline down to Dr. Pierce and asked him if he would take Chloe as a patient, and he said yes. He’s been wonderful.”

Through their own fundraising efforts and strong support from their local Lion’s Club, Chloe’s team has raised more than $10,000 for the Baltimore VisionWalk. Chloe also joined a group of students from her Irish dance studio, Ni Riain, to perform at the 2010 walk event.

Holly is quick to recognize her respect and admiration for the Foundation and its efforts. She says, “FFB is a very dedicated and caring group doing amazing and miraculous things, and above all, providing us and so many other people with tremendous hope. Thanks to the Foundation, I know the future is bright for Chloe’s vision.”