WESTLAKE VILLAGE (CBSLA.com) — Like most 5-year-old girls, Eden Gallo looks up to her big brother.
But what you can’t see when you first look at Eden is that she’s fighting an extremely rare disease, but there is a glimpse when she speaks.
“She was a perfect happy little girl, walking,” said Limor Gallo, her mother.
Limor and Dan Gallo say Eden hit all her early milestones, talking, walking, then at 14 months, “we were getting ready to go to a Mommy and Me class with her and she stood up in her crib was yelling my name and just started vomiting,” Limor said.
Pediatricians couldn’t figure out what was wrong. When Eden stopped walking, a family friend who is a doctor asked the Gallos to bring her into his Ventura County emergency room.
“It almost seemed like she was having seizures, something was going on and her eyes started rolling back in head,” Limor said.
Eden was put into an ambulance and taken to Children’s Hospital Los Angeles.
“She was so sick she couldn’t keep food down, her eyes were rolling, they couldn’t even stabilize her for a long time, and we didn’t know if she was going to survive,” Limor said.
Pediatric neurologist Wendy Mitchell immediately noticed Eden’s eye movements.
“They move up, down, sideways and diagonally in very fast, rapid burst,” Mitchell said.
Mitchell diagnosed her with opsoclonus myoclonus syndrome, or OMS. As one of the leading experts in the country, she says it often goes misdignosed.
“It’s not the parents that miss this. Frankly, it’s the fact that most pediatricians have never seen it and most ERs have never seen it,” Mitchell said. “And they miss eye-movement findings. If they see eye movements like that, they need to hold up big red flag to the doctor holding the child and say ‘Is this OMS?’ ”
OMS is an autoimmune disorder of unknown cause that attacks the central nervous system. Children usually show symptoms between 12 months and four years. It is characterized by rapid eye movements, speech impairment, a trembling gait and sleep disturbances. It’s so rare that only about 200 children are diagnosed each year in the United States. It’s not fatal but left untreated can lead to cognitive impairment.
“These kids when they’re acutely ill are — you’d think they are possessed. They’re so irritable,” Mitchell said.
“For the first year when really sick, all she wanted to do was be held. She couldn’t get comfortable. She just wanted somebody to walk around and hold her,” Limor said.
“That was the hardest thing for us I think in the beginning — that we couldn’t help her,” Dan said.
Now, 4 years into it, Limor gives Eden a steroid shot every other day and a nurse helps give her a daylong immunoglobulin transfusion.
Right now, Eden has her 10-hour treatment every four weeks, but she is still able to stay home and do things like play with her brother, Elijah.
“She’s a fighter. She is fearless,” Dan said.
After a year of shutting out the outside world, Limor started blogging about the experience, and from that, Eden’s Journey was born, an organization to raise money for CHLA’s neurology department and raise awareness about rare neurological syndromes.
With the right treatments, Eden is doing more: learning ballet, running a race in her honor and will go on to finish school and one day put this disease behind her.
“Her spirit — I say it inspires me. She wants to take on the world and doesn’t let anything stop her,” Limor said. “I give credit for that. It’s amazing.”
To learn more about the family or find out more about an October 3 fundraiser, click here.