A Girl’s First Glimpse of the Stars
by Merritt M. McNeely, Director of Marketing
Adalissa’s Story of the Stars
Her first glimpse of the night sky at the South Carolina State Museum
Having a child diagnosed with Bardet Biedl Syndrome, or BBS for short, is something only a small portion of the population has to deal with. From obesity to retina failure, the genetic disorder can make life pretty tough for those who are afflicted by it. The disorder renders most blind, as will be the case for Adalissa Howard.
Hailing from Ninety Six, South Carolina, Olivia Howard and her daughter, Adalissa, have been dealing with BBS since Adalissa was a small child. Diagnosed at the age of seven, Adalissa’s vision has been deteriorating ever since and she suffers from night-blindness. Doctors say she will likely lose her vision by the age of 15. However, the spirited 11-year-old isn’t letting this slow her down.
Field of Galaxies from the SC State Museum Planetarium
In search of stars
While attending a BBS conference for families in 2014, Olivia was talking to other parents of children who shared the disorder and they stumbled upon the discussion of the night sky. The parents all wondered if their children could see the stars as they do. Upon returning home, Olivia wanted to test Adalissa’s ability to see the stars in the sky. She waited until the stars were shining bright to ask her daughter if she could see them.
Olivia said, “Look up Adalissa, look at those beautiful stars.”
Adalissa’s response was the one Olivia had been fearing. In a small, soft voice she replied “Where, momma?”
Olivia knew she had to find a way to show Adalissa what the stars looked like before she completely lost her vision. She was determined to not let Adalissa miss this experience that so many of us take for granted.
Planetarium Manager, Liz Klimek, shows off the planet Saturn on the planetarium’s 55ft digital dome.
Adalissa’s grandmother told a friend about her grandchild’s inability to see the stars. In a stroke of genius, her friend suggested that Adalissa might be able to see the stars inside the massive dome of the South Carolina State Museum’s planetarium. Olivia had no idea if it was possible, but she was going to do what she could to deliver the stars to her daughter. Oliva reached out to the museum’s staff and told the planetarium manager, Liz Klimek, her story. Together, they scheduled a special visit to the planetarium for Adalissa.
Arriving over Adalissa’s spring break, Olivia and her family stayed in the planetarium for more than an hour after the museum had closed to the public, with both Liz and her husband Jack (also a planetarium expert). Liz and Jack created a special night sky just for Adalissa in hopes that they could deliver the promise of constellations and stars for her to see. The moment the lights dimmed and the stars appeared, the staff and family all held their breath, waiting for Adalissa to respond.
With a squeal of excitement, no words were needed to explain what the 11-year-old just experienced. Adalissa could finally see the stars. For the first time in her life, she experienced the mysterious and beautiful beacons of the universe.
After the planetarium experience, Adalissa said, “I loved everything. It was so cool and pretty. We got to point the laser and connect the stars with a red dot. They showed me all of the planets. I really liked seeing the stars; the Sun, Earth, Venus and the moon. I can’t wait to come back with my family.”
“It brought tears to my eyes when she could finally see them. It made me realize that we all take simple things, like looking up in the sky, for granted,” Olivia added.
The BlueCross BlueShield of South Carolina planetarium at the SC State Museum.
Expanding the view
Since their experience at the State Museum, Olivia has connected with a family in South Carolina that also has a child with BBS. She plans on bringing this family with their recently diagnosed seven-year-old son to the planetarium, so he can see the stars like Adalissa did.
“I am glad that this resource is available for my daughter,” said Olivia. “I want other people to know that it is also available for them. I hope Adalissa’s story will inspire others who are blind or visually impaired to visit the planetarium and see the stars.”
Adalissa and her family plan to return as often as they can with her two-year-old baby brother, who was also just diagnosed with the disorder. One day soon, her brother will also lose his vision, but not before his family can show him how magical the night sky can be.
Explore the magic of the universe through the museum’s planetarium and other immersive exhibits.