Just 2 1/2 years old, Luna Loveless already dazzles her parents.
With her adorable smile, of course.
But also with the rapt expression she holds as she sits on her living room floor, a toy piano in her lap, carefully plinking one note at a time.
And the way she rattles off her ABCs—forward and backwards.
And don’t get us started with her ability to count to 10. She does it in five languages: English, Japanese, French, Spanish and German.
These accomplishments amaze and delight her parents, Matthew Loveless and Rena Markus. It’s not a scene they imagined when they learned Luna, then an infant, had a severe visual impairment.
But from the beginning, their blue-eyed, sandy-haired little girl has been full of surprises.
“People ask me how she’s doing, and I never know how to answer that,” Rena says. “She’s perfect. Everything’s great.”
As therapists, teachers and her parents help her meet the unique challenges and develop her gifts, Luna’s potential continues to grow.
‘It was a shock’
Luna was 3 months old when her parents first noticed something unusual about her vision. Her eyes appeared “shaky.” Rena thought she had nystagmus, a vision condition in which the eyes make repetitive, uncontrolled movements.
Subsequent evaluation showed Luna has optic nerve hypoplasia. She was born with underdeveloped optic nerves in both eyes.
The parents learned she had a severe form of the condition. If Luna was able to see, she would likely have only light perception.
“It doesn’t seem that she can see anything,” Rena says. “She can stare right at the sun.”
Further tests showed her visual impairment is part of a midline brain disorder, called septo-optic dysplasia.
Septo-optic dysplasia involves under-development of the midline structures in the brain, sometimes causing endocrine gland abnormalities. Because of this, Luna has diabetes insipidus, a disorder that causes overproduction of urine and excessive thirst.
Learning about the vision impairment and brain abnormality was tough.
I have a lot of faith in her potential.
“It was a shock,” Rena says. “That’s definitely not where I thought I was going.
“But my general thinking is if she’s not sad by it, then I’m not allowed to be. I try to be strong for her.”
She wipes Luna’s face with a warm cloth, and Luna coos happily. She rolls on her back, pulling a toy guitar with her, chanting, “Yeah, yeah, yeah.”
Luna’s dad is a drummer, so her parents delight in seeing her musical gifts develop.
“Oh, man, she can dance,” Rena says. “She just shakes to the beat. She has never seen anybody do that before. She just feels it.”
“The eyes form early in the first trimester of the pregnancy. This is a complex process and in Luna’s case, the optic nerves did not fully develop,” she says.
For Luna, a primary goal in her early years is connecting her to services that can help with mobility, orientation and support with learning.
“A visually impaired infant often has delayed gross and fine motor skills,” Dr. Geddie says. “If you can’t see, you may not be so open to walking or running, for instance. The visually impaired don’t have the visual cues to prompt the skills we take for granted.”
But even if they lag in physical development as infants and toddlers, in the long run, “visually impaired children adapt amazingly well,” she adds. “In fact their accomplishments and non-visual abilities never cease to amaze me. From a young age a child with visual impairment can learn to use the other senses and can really excel at things a sighted person may not, for instance exhibiting an early talent in music.”
In addition to the ocular health of visually impaired children, Dr. Geddie also strives to educate their families about their potential to accomplish great things. She coordinates care with a teacher consultant for the visually impaired, to ensure the children have individualized resources needed for learning.
And she helps parents connect with each other.
Every year, she and another pediatric ophthalmologist, Patrick Droste, MD, and Helen DeVos Children’s Hospital host a Visually Impaired Sports & Activity Day, which brings together children and families for a fun-filled day. In June, Luna attended the annual event for the third time.
Rewarded with cuddles
At the Helen DeVos Children’s Hospital Outpatient Center, Luna receives physical therapy and occupational or speech therapy every week.
On a recent morning, her speech therapy session involves chocolate pudding. The tiny bites of the sweet treat represent a big victory for her.
Because of sensory issues, Luna has never wanted to eat from a spoon or eat anything with texture. She only eats food that is pureed and given to her in a bottle.
Jami Petersen, a speech and language pathologist, has helped Luna reach this point by taking it one step at a time.
“We actually started with a dry spoon to get her used to that,” she says. She moved on to small “water bites” and then water mixed with pudding.
“After we get more volume, we will start gradually adding more texture to get to more table foods eventually,” Petersen says.
In physical therapy, Luna stands at a low therapy table, rocking back and forth as a song plays from the toy piano.
Physical therapist Geri Troupos helps her to reach back to find the edge of a molded plastic chair. Luna whimpers and cries as she sits down and stands back up several times. At one point, she plops back on Troupos’ lap and pouts.
Music helps her through each step. Her mom and therapist sing the ABC song, and Luna’s tears quickly vanish as she joins in.
Next, she practices walking with a walker. Again, she protests with tears and pouts, stopping her progress repeatedly. But cheers and a chorus of “Wheels on the Bus” get her smiling and moving again.
As she reaches the end of the 40-foot stretch of hallway, she gets a hug from Desi’ree Ross, the rehabilitation therapy technologist who has encouraged her every step of the way. Luna closes her eyes and snuggles close.
“Cuddles are her reward,” Ross says.
Both skills—walking and getting into a chair—will be useful for Luna when she starts preschool in the fall.
In addition to her therapy sessions at Helen DeVos Children’s Hospital, Luna receives home visits from a physical therapist and vision specialist.
And her parents have gotten practical tips from other families with children who are visually impaired.
“We see milestones where other kids are at,” Matthew says. “It helps with our thought process, as far as what we should be doing (at home).”
Meeting other families has also helped him realize how much kids with visual impairments can accomplish.
“It’s unfathomable how well they can do,” he says.
But in understanding Luna, there is no better guide than Luna herself.
“She likes to cuddle. She likes music. She likes rhythmic stories,” Rena says. “She can mimic pretty much everything.”
Matthew marvels at the way his daughter recites entire episodes of cartoons.
“She is super talkative,” he says. “Just like her dad.”
Playing in her living room, Luna shows off her ABC skills. Without help or prompting, she recites all 26 letters, starting with Z and ending with A.
Her mom claps and cheers, and Luna joins with hearty claps.
“I’m excited to see where she goes,” Rena says. “I have a lot of faith in her potential.”