Hoodikoff Family Trip
Photo Courtesy of Stephenie Hoodikoff
This is the third in a five part series that examines the story of Alex Hoodikoff after she was diagnosed with a serious illness.
Alex’s FOP diagnosis turned the Hoodikoff’s lives upside down. They all had to adjust to the rapid change and there was no time to sit back and fully comprehend what was going on.
“I didn’t want to deal or talk with anyone,” Stephenie Hoodikoff said. “I didn’t even want to leave the house. The day I left for the first time, five days later, it felt wrong.”
Hoodikoff and her husband, Scott, eventually had to break the news to their families. Daniel and Nikki, Alex’s brother and sister, were told first, followed shortly after by Alex’s grandmothers. Other family members and close friends were eventually notified but were asked to give the Hoodikoff’s space.
“We asked to be left alone for awhile and that helped since we were trying to understand it ourselves,” Hoodikoff said.
Alex especially needed time to comprehend her situation. FOP restricts a person’s movement and he or she cannot risk getting injured or a flare-up will occur. This was a drastic change for Alex, who was an active child.
“I wondered if I was going to die. I was horrified and sad. It was very scary,” Alex said.
Shortly after the diagnosis, Scott and Stephenie discussed what would be the best way to handle the new change in their family’s lives. They also decided what they did and didn’t want for Alex.
“She had to have a normal life and live as normally as possible. That is how we approached it,” Stephenie said.
Since Alex has to be extremely cautious to avoid injury, she had to change or stop doing certain everyday activities at home and at school.
“Although she does snap at us some times when she gets frustrated, for the most part she’s very patient,” Stephenie said.
Alex has a great support system with her family, especially with Daniel and Nikki. To help Alex, her siblings have stepped up to taking on more tasks at home.
“There is more work for Nicole and I to do since we are having to do her jobs as well as our own,” Daniel said.
It’s not only chores that Alex needs help with. There are everyday things, such as changing clothes, going to the washroom and showering, Alex can’t do by herself. She needs assistance with things that most people take for granted.
“We’ve all had to step up. Every thing to do with caring for herself is now up to us,” Stephenie said.
Alex has to be even more careful to not cause any flare-ups at school. She leaves class early or late to avoid being bumped by other students.
Alex also had difficulty getting around school and had to have a friend push her around in a wheelchair. She now has a motorized chair with a tray on the side. She can work from the convenience of her chair and get around school without relying on someone else.
Alex Hoodikoff School Picture 2014 Photo Courtesy of Stephenie Hoodikoff
Since last year, Alex has had a teaching aid with her at school. She can no longer participate in PE and uses a computer to help her write. Alex missed a lot of school last year but has since caught up and getting good grades. Despite the changes at school, there is still many things that have stayed the same.
“I still have good friends and a lot of homework to do,” Alex said.
Hoodikoff notes that they have had nothing but support from friends and family. Everybody still treats Alex the same but they are more cautious and protective. They haven’t noticed any negative responses from anybody, either.
“People look at her when she’s walking but not for long periods of time. They are just curious. We don’t really notice any negative responses. Overall, people are very helpful and willing to assist in any way,” Stephanie said.
Alex also doesn’t notice any negative responses from people either.
“I think people still treat me the same and as a normal person,” she said.
Coming in part four: Alex and the Hoodikoff’s spreading FOP awareness
Previously:
Part 1: A young girl’s battle
Part 2: Diagnosis came as a shock
