Alex Hoodikoff: A young girl’s battle

This is the first in a five-part series that tells the story of Alex Hoodikoff, before and after she was diagnosed with a serious illness.

At 32 weeks, Stephenie Hoodikoff went into premature labour with her second child. Since her first child was also born prematurely, Hoodikoff was put on bed rest for four weeks until it was considered safe to deliver the baby.

On Friday, Sept. 13, 2002, at approximately 2:35 a.m., Alexandra Hoodikoff was born, weighing a healthy 7lbs., 5 oz.

Alex as a baby. Photo courtesy of Stephenie Hoodikoff

Alex as a baby. Photo courtesy of Stephenie Hoodikoff

“She slept the whole night by my side. She did not like sleeping in the portable the hospital provided,” Stephenie said.

The morning after, Hoodikoff checked Alex to make sure nothing was wrong. She noticed her daughter’s crooked big toes. “When I asked the doctors about it, they just said it was just something that made her ‘special’ and was nothing to worry about.”

Alex’s health issues became noticeable as early as three months of age. Throughout her early childhood, she was seen by several doctors, dieticians and pediatricians. Nobody could figure out what was wrong with her.

Despite the complications, Alex grew up as a happy, easy-going kid. “She was never demanding much from us and always being satisfied in her home,” Stephenie said. Alex loved school and never complained about going. “She makes friends easily and everyone treats her really well.”

Compared to her siblings Daniel and Nikki, Alex was shyer and preffered to hang back rather than be in the spotlight. She often acted as a mediator between the two. Despite her quieter nature, Alex had a great relationship with her siblings. “Whenever Alex was sad or upset, I used to take her toys and play with them to make her laugh,” Daniel said.

Family portrait of the Hoodikoff children. Photo courtesy of Stephenie Hoodikoff

Family portrait of the Hoodikoff children. Photo courtesy of Stephenie Hoodikoff

Starting at the age of three, Alex loved to do competitive dance and enjoyed learning different types of dance, including ballet, tap and jazz. She continued with her passion until 2012 when her Achilles tendons were painfully tightening. Alex was referred to an orthopaedic surgeon at British Columbia Children’s hospital, where over the next two years she went for numerous tests and six months of physiotherapy. Finally, Alex was booked to have surgery in September 2014 to lengthen her Achilles tendon.

In March 2014, just before spring break, 11-year-old Alex woke up with hard, red, sore lump on her neck. Hoodikoff took her to the clinic, where Alex was tested for mumps and cancer, and was told to come back in two days if it didn’t improve. There was no improvement. For the next two months, Alex was in and out of the hospital, undergoing numerous tests such as MRIs and ultrasounds. She was seen by 20 doctors, ENTs, rheumatoid specialists and oncologists. Again, nobody could figure out what was wrong.

At the end of May 2014, Scott Hoodikoff, Alex’s father, took her to see a rheumatoid specialist. They were told that Alex had to avoid any type of collision, dangerous activities or immunizations. On the last weekend of May, the family travelled to Kelowna for son Daniel’s baseball tournament. When they returned, Stephenie recieved a phone call asking her to take Alex back to Bristish Columbia Children’s Hospital to see a genecist.

Stephenie arrived with some research she had conducted on a form of muscular dystrophy. “I had printed out pages and pages of info on the condition I thought she had. They didn’t even look twice at it; I thought that was odd.”

The doctor looked Alex over, then asked her to remove her shoes and socks. He examined her feet before asking Alex to put everything back on and to go back to the waiting room.

She left, and Stephenie and Scott finally got the answers they were looking for.

Alex was diagnosed with FOP – Fibrodysplasia Ossificans Progressiva.

Coming in part two: What exactly is FOP?

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