By Victoria Sananikone
Participating in sports and certain activities can be challenging when you have ectodermal dysplasia. But, there are those who refuse to allow their conditions to hold them back.
Jordan Buerman, the daughter of Rachel and Chris Buerman, is one of these individuals who continues to stay active even with her condition. Jordan was born with focal dermal hypoplasia, also known as Goltz syndrome. Her condition causes her to have a number of challenging symptoms, but they have not gotten in the way of her pursuing athletics.
Competitive Gymnast
Ever since her parents began taking her to gymnastics classes when she was in kindergarten, Jordan’s love for the sport has continued to grow. Now, at 12, Jordan is a talented gymnast who has gone to state in the uneven bars, which is her favorite event.
“I like gymnastics because it’s fun!” Jordan said. “I really like the uneven bars.”
“We threw her in at about kindergarten age,” Chris Buerman said. “We wanted to see if it was something she could get active in. She immediately took to it and gained a lot of attention from her talent.”
Overcoming Physical Challenges
Due to Goltz syndrome, Jordan was born with very thin skin, vision in only one eye, a permanently broken collarbone, and a limb malformation that requires her to wear a prosthetic leg. Although these symptoms can make life more difficult, Jordan has pursued her love for gymnastics with an unrelenting passion.
To help her further excel in this sport, her doctor recommended changing her prosthetic to a carbon foot, a prosthetic foot containing carbon fibers that gives you an extra spring in your step to propel you forward easier. Jordan was not getting the scores that she deserved in her gymnastics meets because her prosthetic foot was too small and not mobile enough for the skills that she did.
According to her dad, the individual who created her prosthetic reached out to other prosthetic companies to help them create a foot that would help Jordan when she practiced and performed. Jordan’s new carbon foot allows her to push off and run with easier and more natural strides, while also helping her spin on the uneven bars.
Jordan’s carbon foot has helped her tremendously, but her gymnastics community has also helped her to reach her goals. Her coaches and teammates on her club team have made modifications for her to practice and compete just like any other member of the team.
Push-Up Champion
They position equipment for her foot and for her impaired vision, and when she is warming up, there is always someone who follows her to help her along. As for her broken collarbone, Jordan does a lot of strength training to counter the lack of stability.
“I am a high school basketball coach,” Chris Buerman said. “Jordan challenges my teams to push-up challenges. She is still undefeated for most consecutive pushups!”
As she has gotten older, her parents have gotten rid of their safety net for her. She can now do 99% of things on her own. They say the biggest challenge was getting out of the way to allow Jordan to reach a failure point without them.
But, Jordan gets right back up.
Until they are told that Jordan has Goltz syndrome, most people don’t realize that she cannot see properly until she begins her performance because of her skill. Jordan’s talent and her love for gymnastics will surely inspire others.
She inspires us!
Jordan is so inspiring to me. I was born 67 years ago, with a form of Arthrogryposis Multiplex Congenita (AMC), a rare neuromuscular disorder that causes weakness and pain. At birth, my legs and feet were bent backwards. Thankfully, early intervention started at 1 month of age, so that I could walk by age 2. But I have always had intense pain when walking due to the “nothing but skin and bone” nature of the feet. I also have dental, skin, and sweat gland dysfunction: in 1976, a young JHH dermatologist told me it was likely a rare form of Ectodermal Dysplasias. The shoe store P.W.Minor and sons closed several years ago; and, they were my sole source for “Dutchess” shoes that helped relieve the pain so I could walk. Recently, I visited an experienced podiatrist for a consult on custom-molded shoes. He thought I would not be able to tolerate them; and, he called my last beloved old pair of “Dutchess” shoes too ugly for anyone to want). I told him i would pay a thousand dollars for a pair of custom-made shoes just like the Dutchess (he had already told me he “hated” taking a thousand dollars for custom-molded shoes he felt I could not use). My skin tears too easily on my feet to wear regular leather. Interesting side note, in the 1980s, another dermatologist thought I may have Goltz syndrome. Later, that diagnosis was dismissed by another JHH dermatologist. I am searching for any ideas for shoes with extra depth; velcro straps; square toe; seamless lining; and super soft deerskin leather; and, would be extra appreciative for feedback.
Thank you for your inspiring families and support group network.
Hi, Virginia. Thank you for sharing your story. You have been on quite a journey to get a diagnosis and for comfortable shoes. Our heart goes out to you. Unfortunately, the NFED doesn’t keep any kind of lists about companies which create the type of shoes you seek. I am hopeful that another family will read your question and have ideas for you. I will also post your question on our Facebook page without using your name to see if anyone has ideas. Stay tuned. Good luck and take care. ~ Jodi, NFED, Director, Marketing and Communications
Thank you Jodi