Manchester, MO — Seven days a week, you can find Ella Furjes in the pool, working on the butterfly.
“Because no one really does it because it’s the hardest one,” the Parkway South sophomore said.
Tackling the most difficult stroke may be the easiest part of Ella’s day.
“I have a skin condition called epidermolysis bullosa. It basically causes blisters,” she said.
It’s a rare genetic mutation that causes blisters all over her body, all day, at any sign of friction. She says she's in pain all the time, but the water helps relieve some of the pressure.
It’s the worst on her feet.
“Those toes are literally connected,” her mom said.
That’s why Ella uses her knees to walk and stand, even when she dives into the water.
“I’m not diving off my knees for fun,” Ella said.
It’s how she’s been doing it for 11 years. But the Missouri State High School Activities Association says it’s not allowed. Ella must start each race in the water, they say.
The association sent the school a letter in early 2018 to deny her request for an accommodation, but Ella just found out about the denial this week. They say the school has to re-apply this season.
“Everyone who dives off the block not only gets height but more momentum, but if I’m in the water I can barely push off on my own,” Ella said.
She says that’s not fair, and it puts her at a disadvantage.
“She’s had a very, very rough year this year. We’ve had five hospital stays this year alone, and I just don’t want another battle for her to have to fight about,” her mom, Gwen, said.
She also doesn’t want one more thing that makes Ella feel different.
“All she wants in live is to be treated just like everyone else,” Gwen said.
So Ella and her family are going to fight for an equal shot to fly.
You can read the letter from MSHSAA below.