CENTREVILLE — Being a parent is a wonderful but busy job that brings many day-to-day needs, questions, and concerns. Imagine having to worry more about every fall, bump, or even vaccine that your child receives on top of all the daily worries. On November 27, 2022, Jon and Erin Krisman, of Centreville, learned their two-and-a-half-year-old son, Ethan, was one in a million.
As a small toddler, Ethan was diagnosed with FOP, Fibrodysplasia Ossificans Progressive, which is, “one of the rarest, most disabling genetic conditions. It affects one in a million people. FOP turns muscles, tendons, and ligaments into bone, progressively restricting movement. This loss of mobility robs people with FOP of the ability to walk, open their mouth, and even toilet or bathe independently” according to ifopa.org.
Ethan’s one-in-a-million journey began when he was born with malformed toes. The doctors assured his parents that there was nothing to worry about. Then, at three weeks old, Ethan got a growth-sized lump on his back. Even after an MRI at five months old, the doctors were not sure what was causing Ethan’s body to react in this manner.
When Ethan was learning to walk, at one-year-old, a normal toddler tumble caused facial swelling and hard bumps on his head. Again, the doctors assured the Krismans they had nothing to worry about, as it was just typical bruising. At two and half years old, more bumps and swelling occurred after Ethan received his flu shot. After two and a half years of wondering and numerous doctor visits, the Krismans received their answer. A rare bones specialist, diagnosed Ethan with FOP. It was the first case the specialist ever diagnosed. Devastated, the Krismans began to learn all they could about FOP.
There are less than 1,000 cases of FOP in the world. Kim Schultes, Ethan’s preschool teacher, explains that Ethan is “very quiet at school, but very silly at home with his brother. He is very smart and sweet. The kids love him, and he loves the other kids as well.” FOP ranges in severity. Currently, at four-years-old, Ethan can go on walks, loves playing legos, and loves playing with Lucas (his older brother).
His parents said they try to encourage Ethan to do as much as he can on his own, but they never know what injury will cause new bone growth or even potentially lock his jaw closed. “Every time Ethan is not feeling well or gets hurt, Lucas is right by his side ready to hold Ethan’s hand. It would be wonderful to bubble-wrap Ethan and keep him safe from any injury or illness that could speed up the progression of the bone growth, but that is not realistic.”
FOP ranges in its severity from mild stiffness to deafness to not being able to walk. Some may need a wheelchair or a special van. Thankfully, Ethan can walk and play carefully. But, the Krismans do have to take extra precautions. Ethan cannot ride a bike; he wears a protective headband, and has an assistant to help him in school. Trying to hold back the tears, Jon Krisman shared the struggle they have knowing that a cure does not exist. “People should be aware of [rare diseases] just like they are aware of other things happening in their community,” he said, “you never know what someone is going through or their family is going through.
The Krisman’s know rare diseases are not that uncommon. “Not a lot of people talk about it or know about it unless it’s directly impacting you. We want people to know that FOP doesn’t run Ethan’s life. It’s part of who he is, but FOP isn’t Ethan. Just because somebody has a disability or condition, it is not who they are. It’s a common thing and people should feel comfortable about it.”
Building awareness is important to the Krisman family.
The family’s website aims to bring awareness while raising funds to help find a cure for FOP. While there is no cure for FOP, hope is on the horizon. In the summer of 2023, the FDA approved the first treatment for FOP. Girls have to be at least 8-years-old; boys have to be at least 10-years-old. Ethan is not yet old enough for this treatment.
While balancing working full-time, many doctor visits, and raising their two boys, the Krismans have set goals to raise awareness about FOP locally and raise funds to find a cure for FOP. With a goal of $10,000, the website has raised almost $6,000 to date.
Andrea Schultes, Ethan’s teacher, researched FOP last summer in order to ensure Ethan’s school experience was successful. Schultes explains that she “immediately fell in love with the [Krisman] family the first day she met them.” Schultes said she was amazed by their strength. “Meeting Ethan and putting a face to everything I read over the summer, I knew I wanted to do something to raise awareness and to try to raise funds to go towards helping research for a cure.”
Schultes planned and held a fundraiser for the Krisman family this April. “I want the community to come together to support the family because it’s not an easy road that they are traveling down,” she said.
“Ethan’s Walk!” was held on April 21, at the Route 18 Park in Centreville. Participants were encouraged to “dress up like your favorite superhero” in honor of Ethan, who is a daily fighter, an inspiration, and a real-life superhero.
The t-shirts from the walk stated, “not all superheros wear capes.” Music, face painting, games, Kona Ice, and encouraging signs helped guide walkers — of all ages — as they celebrated just the beginning of the local community’s help and support for the Krisman family. ”
To help support the Kriman family, to learn more about FOP, or to make a donation to help find a cure, visit https://ifopa.salsalabs.org/teamcurefop/p/inhonorofethankrisman/index.html or email Jon Krisman at jwkrisman@gmail.com or Erin Krisman at emtaynor@comcast.net.
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