Chryse Ellinos says she likes to have a plan. But her life, for the past five years or so, has required a change in plans on a regular basis.
When her daughter, Isabella, was born, the baby went straight to the neo-natal intensive care unit for a heart condition.
Tribune Chronicle photos / Michelle Robbins
Isabella Ellinos, 5, colors at the kitchen table. Isabella has Moebius syndrome, a condition that leaves her unable to move her face and unable to move her eyes laterally.
Then, Ellinos and her husband, Michael, were told by a team of doctors that their little girl may never talk, walk or hear.
"I sort of decided then I was going to have this happy face," Chryse Ellinos, 39, remembered recently. "I gave myself 15 minutes a day to cry like a 2-year-old."
Little Isabella Josephina had been diagnosed with a rare neurological disorder called Moebius syndrome. According to the Moebius Syndrome Foundation website, the disorder affects the sixth and seventh cranial nerves, leaving those with the condition unable to move their faces and unable to move their eyes laterally.
Children with Moebius may not be able to smile, frown, suck, grimace or blink their eyes, and there may be skeletal involvement causing hand and feet anomalies, as well as a list of other conditions.
Isabella is now 5, and she has had two surgeries on her eyes to help them align. Many of the children born with Moebius have crossed eyes. According to Vicki McCarrell, president of the Moebius Syndrome Foundation, if left untreated, the condition results in one of the eyes eventually shutting down.
Because of the difficulty in blinking, Isabella has transition lenses and needs to cover her eyes if it's very bright outside.
Her pointer finger on her right hand is not fully developed and is shorter than the rest.
She also has nerves in her eyes and cheeks that are not developed on one side, which prevents her from having bilateral control in her eyelids and cheeks.
"It could be ten thousand times worse," said Chryse Ellinos. The family discovered this while attending a conference in New Jersey for those affected.
McCarrell said there are people like Isabella, or her own son, who only have the facial issues.
"If you think about it, try eating or talking without moving your face," she said. She also recommended trying to see without being able to move your eyes side to side.
Others with Moebius can be very severe, even born without limbs.
At about 2, Isabella wasn't talking, so her parents had her tested for autism.
"We're finding that about 30 percent of the kiddos with Moebius syndrome are on the autism spectrum," McCarrell said.
Isabella started therapy at 2 years old - an out-of-pocket cost for the family. In addition, her first school experience was in the public system, also out-of-pocket.
"Because she got early intervention, she's more toward Asperger," her mother said.
Meanwhile, Chryse gave birth to a baby boy. Again, at about 18 months, he wasn't talking, so he also was tested. He is now considered to be autistic.
At 5 and 3 years old, the Ellinos children go to school in the morning and then receive therapy in the afternoon in a classroom set up in their home.
One of the ABA, or applied behavioral analysis, tutors is Kara Voytkos.
"Kara comes and sees what's going on in our little world," Chyrse Ellinos said.
Voytkos, who works through the Knapp Center for Childhood Development, said Michael is highly functioning on one end of the spectrum, but his communication abilities are lacking.
"Ask him a question and there is no answer," Voytko said. "He just looks at you."
He responds to prompting and can point at words to answer, because at only 3 years old, he is reading. He also regurgitates movies, commercials or books word for word.
His mother said he's "slightly obsessed" with Martha Stewart and the iPad.
Michael is also prone to putting non-food items in his mouth, like paper products.
Voytkos said with Isabella, it's more the physical disabilities that are addressed, such as wearing a patch to keep one eye from weakening and making sure she does OK with the shortened pointer finger.
"Her verbal is off the charts," Voytko said about Isabella. "She uses words that are beyond her level."
Chryse Ellinos and her husband Michael adapted to the changes. Then came a long-sought-after diagnosis for him - multiple sclerosis.
"Believe me, up until my diagnosis, it was all about the kids," Michael Ellinos said. "Everything was manageable because we were working together."
Michael Ellinos is a physically active man, and for six years he wondered why he was in pain, why his foot was dragging, why he struggled to walk. Doctors told him he shouldn't have such pains.
Once he was diagnosed, he admits the setback was him not listening to the doctor - "for fear of being a person I didn't recognize." Apparently, the drug for MS can cause severe depression.
For Michael Ellinos, 41, an epiphany came on April 3, the date of a huge fundraiser for the family.
"I felt like I was entitled to lay around every Sunday," he said. But seeing what everyone had done for his family was what he needed.
He now spends time in the pool instead of running, and, although his wife would prefer otherwise, he doesn't even use a cane.
"I feel great," Michael Ellinos said.
That event on April 3 was meant to raise funds for the children's therapy.
Because they were going at a younger age to get a jump on the autism, and because the state's autism scholarship program only goes so far, there are bills to pay.
The cost, each week, is $1,500. After the scholarship, according to Chryse Ellinos, the family is left with $38,000 out-of-pocket cost per year.
The fundraiser was held at The Embassy, and more than 1,300 tickets were sold. There was food, auctions, entertainment, kids' activities and more.
"They had about 300 different auction items, and every Greek lady we know made pastries," Chryse Ellinos said. She added that the event raised enough for an entire year of therapy.
So how does this mother, who also is an art teacher at Youngstown City Schools, keep going?
She has a sense of humor, and she smiles a lot. Her home is full of family and noise and life. She feels that people just fall into her life - another therapist happens to be a family friend, two sisters who babysit are pretty much part of the family. She tries to keep the kids busy doing lots of activities.
"I have patience," she said. "And I drink a lot of coffee."
And even if it is just on one side, Isabella smiles a lot, too.
McCarrell's advice to those who meet a child with Moebius:
"I would just say treat them like a normal kid," she said. "Their smile's on the inside. Their smile's from the heart."