MILWAUKEE COUNTY — For Mary Steck, some of the moments she treasures most are the simplest ones, watching her daughter McKenzie smile, talk and find her way through the world.
McKenzie was born with epidermolysis bullosa, or EB, a rare genetic disorder that causes extremely fragile skin. Even everyday activities such as moving and interacting with the world can be painful.
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“She is fierce. She is so sassy, so full of personality. She talks constantly,” said Steck.
Steck said her pregnancy was completely normal but when McKenzie was born, doctors quickly realized something was wrong.
“She was born without skin on her feet and legs and on her hand. She blistered at the slightest touch,” Steck said.
McKenzie was transferred to Children’s Hospital, where her family received a diagnosis they had never heard of.
“We didn’t know if she was going to live. We didn’t know what her life was going to look like,” Steck said.
McKenzie has one of the more severe and rare forms of EB. Her skin can blister and wound easily, requiring bandages that must be changed several times a week. It's a necessary but painful process.
“She asks me to stop, and she’ll yell no, and I have to just keep going,” Steck said. “I have to keep her as healthy as I can.”
Despite those challenges, Steck said McKenzie continues to find ways to stay active and independent and she now uses a walker to get around.
“She is so joyful that she can do what she wants, get to where she wants,” Steck said.
McKenzie’s strength has also inspired her mother to advocate for greater awareness, better treatments and, ultimately, a cure for EB.
Steck co-founded the nonprofit Fragile Wings, Fierce Hearts with a goal of educating more people about the disease while raising money to support research.
“I want to raise as much money as I can to help fight for more treatments and ultimately help fight for a cure for every form of EB,” Steck said. “But first, I need everyone to know about it.”
The organization began with a conversation between friends.
“What started over a couple glasses of wine at night and just chit-chat in the backyard turned into Fragile Wings Fierce Hearts,” Steck said.
Ann Knapp, the organization's event director, said the group was created with local families who wanted to support Steck and McKenzie.
“We are just a bunch of local moms and families that wanted to come around a friend and support them,” Knapp said.
Last year, the organization's first gala raised more than $155,000.
Now, Fragile Wings, Fierce Hearts is preparing for its second annual gala, planned for Feb. 6. The event is intended to raise money for EB research while also increasing awareness of the disease.
“It’s about creating an evening of hope, driving more awareness and educating people about what EB is, but also creating money to find better treatments and hopefully one day a cure,” Knapp said.
Steck has also been open about McKenzie’s journey on social media, sharing her daughter’s story in hopes of helping more people understand EB.
For Steck, her daughter’s future remains uncertain but hopes she wants for McKenzie is simple.
“I hope she’s happy, and I hope that she knows that I am fighting for her and that I love her,” Steck said. “I hope she feels the tangible support and love that everyone in the community has for her.”
Tickets for the second annual Fragile Wings, Fierce Hearts Gala go on sale Oct. 27.
The organization is also currently seeking raffle items for the event.
The of proceeds from the gala go directly to EB Research Partnership (EBRP).
To learn more about Fragile Wings Fierce Hearts, click here.
You can follow McKenzie's journey on social media.
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