This is the fourth in a five part series that examines the story of Alex Hoodikoff after she was diagnosed with a serious illness.
About three months after the shock of the diagnosis of Fibrodysplasia Ossificans Progressiva (FOP) wore off slightly, Alex Hoodikoff and her family decided it was time to reach out to other people.
“I met with another mom from B.C. whose daughter has FOP and I was able to get a lot of questions answered,” Stephenie Hoodikoff said.
Opening up to the FOP community helped the Hoodikoff’s understand their situation. They learned more about FOP from people like themselves who are experiencing it first-hand.
“They have so much knowledge of FOP and have something common with our family. It’s a good support group,” Scott Hoodikoff, Alex’s dad, said.
It also helped the Hoodikoff’s reflect on their own lives and realize they still had a lot to be thankful for.
“Selfishly, it helped us realize Alex was on the better spectrum of FOP compared to others. It helped us be hopeful that she has made it this far and isn’t as badly affected as others. There is hope,” Stephenie said.
Slowly, the Hoodikoffs began to actively participate in the FOP community. They started handing out fliers at their church and discussing FOP with others more openly. In the past year, their participation has grown to include organizing several fundraisers, including a golf tournament for Alex, and A Walk for FOP, in hope to raise money for FOP treatment.
“In the end, we hope to achieve a cure or treatment,” Scott said.
Both of Alex’s siblings are also discussing their sister’s condition in hopes of raising awareness. Nikki, Alex’s younger sister, participated a speech competition at her elementary school, where her topic was FOP. Not only did Nikki make it to the final round, she ended up winning the competition.
“I wrote the speech about FOP because I wanted people to know what’s going on. I don’t want them bumping or hitting her because she will get a flare-up,” Nikki said.
The Hoodikoffs echo Nikki’s statement and they all just want people to be aware with what FOP is.
“We just want to bring FOP awareness to people who do not know what it is. We want to help achieve better treatments and more knowledge about the condition,” Stephenie said.
For Alex, she hopes in the future that people will understand what FOP is and how it affects a person.
“FOP is not a disease; it’s a condition. We are still human and not statues,” she said.
Coming in part five: Alex’s conclusion to her story and thoughts about her future.
Previously:
Part 1: A young girl’s battle
Part 2: Diagnosis came as a shock
