Taking life one day at a time
Easter Seals Newsletter
As Fabiana and Stelios Nikolakakis were expecting their second child they wanted nothing more than a healthy newborn baby. Unfortunately, their reality was very different. Their son, Gabriel, was born at 26 weeks and spent 146 days in the NICU.
The doctors spoke a lot about mental delays, physical disabilities, and “50 different things he could develop, but I don’t remember cerebral palsy being mentioned, just disability being a risk,” recalls Fabiana.
Because there was no bleeding in or around the brain Fabiana assumed she and her family were out of the woods. However, given his prematurity and the fact that he would be on oxygen for the first year of his life, Fabiana enlisted the help of physical and occupational therapists to ensure a healthy future for her child.
When Gabriel went off the oxygen he continued to demonstrate asymmetrical tonic neck reflex (ATNR) and was motionless. After a full year without a diagnosis, there were signs that something wasn’t quite right. “He had ‘flamingo leg’, one leg was always up,” says Fabiana.
A doctor told Fabiana and her husband that cerebral palsy might be a possibility for Gabriel’s problems, but Fabiana refused to believe this. “This doesn’t happen in my family,’ she said.
“We went to three different hospitals in Toronto and we even took Gabriel to Brazil for a second opinion; I became determined to fix my child.”
And then came the day she’ll always remember.
“I went to the hospital for Gabriel’s scheduled neo natal check up, his dad didn’t even come,” she explains. “It was just a routine visit. I didn’t think he needed to be there. Then I heard the words ‘spastic quadriplegic cerebral palsy’ and all the oxygen went out of the room. I couldn’t breathe. We had been given a label and I cried for a week.”
Eventually a friend reminded Fabiana and Stelios that Gabriel was still “the same boy he was yesterday, all you have now is a label,” and that changed everything for them.
“Now it’s just one day at a time,” she says. “Our new normal. If he can’t sit in that chair we’ll find one that works. We just need to get creative and make life work for him.”
At first the Nikolakakis’s didn’t know where to turn to for help. When he was a baby, they bathed Gabriel in a baby tub on top of the bed but he outgrew it quickly. They then tried to bathe Gabriel in the tub, but it required two people to do it and he was uncomfortable, struggling to sit properly.
With the help of Easter Seals Ontario, Fabiana and Stelios were able to purchase a bath chair for Gabriel. “With the chair, one person can bathe him. We’re not breaking our backs while we do it. It’s so important for us to function. Now he can enjoy his baths and we make it fun — he laughs and we play. It’s great. We can’t live without the chair now.”
“Before, without the chair, he was not able to feed properly, he couldn’t sit straight, but now he can be part of family meals and family time in the evening and on outings.”
The support Gabriel and his family received from Easter Seals Ontario made all the difference in the world. Fabiana says, “It was more than just the equipment. I felt gratitude for an organization that cares deeply about other families. Easter Seals helped alleviate a lot of the emotional and physical stress my family was going through.”
Thanks to the generosity of our donors, Easter Seals is able to subsidize the cost of accessibility equipment for children with physical disabilities. Together, we are helping kids BE KIDS. Please make a donation today.