Going strong

Highlands Ranch girl battles bone deficiency with optimism, treatment options

Nina Joss
njoss@coloradocommunitymedia.com
Posted 10/3/22

In August 2020, Zoie Burgess climbed her first fourteener with her family. At only 7 years old, the feat was impressive for someone her age.

But even more than that, the accomplishment was …

This item is available in full to subscribers.

Please log in to continue

Username
Password
Log in

Don't have an ID?


Print subscribers

If you're a print subscriber, but do not yet have an online account, click here to create one.

Non-subscribers

Click here to see your options for becoming a subscriber.

If you made a voluntary contribution in 2021-2022, but do not yet have an online account, click here to create one at no additional charge. VIP Digital Access includes access to all websites and online content.


Our print publications are advertiser supported. For those wishing to access our content online, we have implemented a small charge so we may continue to provide our valued readers and community with unique, high quality local content. Thank you for supporting your local newspaper.

Going strong

Highlands Ranch girl battles bone deficiency with optimism, treatment options

Posted

In August 2020, Zoie Burgess climbed her first fourteener with her family. At only 7 years old, the feat was impressive for someone her age.

But even more than that, the accomplishment was surprising for someone with Zoie’s leg condition. It was impossible to tell based on how active she was, but the elementary schooler from Highlands Ranch was born with no anterior cruciate ligament (ACL) in her left knee.

In addition, her left leg was about 2 inches shorter than her right in 2020. She was born with four toes and four metatarsal bones on her left foot, a malformed ankle joint and an extra vertebra in her spine.

Zoie’s condition is a rare genetic disorder called hemimelia, meaning one of her leg bones is shorter than the other. In Zoie’s case, her left fibula is shorter than her right and she has several foot, ligament and ankle anomalies related to the disorder.

Despite her condition, Zoie is incredibly active.

“I like doing any activities,” she said. “I like running and I like to do basketball.”

According to her mother, Kristin Burgess, Zoie’s athleticism is a blessing and a curse. Being active makes her happy, but it also causes her pain.

“You know, she's running, jumping, riding her bike, swimming, walking around the block, whatever it is… and she's hurting while she's doing it,” Kristin said. “So you feel desperate, like, ‘I don't care, I'll do almost anything, pretty much, to fix it.’”

Thankfully for the Burgess family, orthopedic doctors at the Children’s Hospital of Colorado have been able to help Zoie.

According to Dr. Sayan De at the Children’s Hospital of Colorado, some cases of hemimelia call for amputation as the only option for a child. But for other kids, like Zoie, it’s possible to reconstruct the ankle and manage limb length discrepancy through surgeries.

He said the goal of these surgeries is that by the time a child is done growing, their limb lengths are equalized “and they have a functional hip, knee and ankle in order to walk, run, play sports and do the activities they want to do.”

In December 2020, orthopedic surgeon Dr. Jay Albright at the Children’s Hospital of Colorado performed a surgery on Zoie in which he constructed an ACL out of her iliotibial (IT) band, a thick tissue that runs down the side of the upper leg. In July 2021, Zoie returned for a surgery involving ankle reconstruction and guided growth procedures by De.

In the guided growth procedures, metal plates were positioned at her bone’s growth plates to slow the growth of her right leg and to correct the angle of growth in her left leg, De said.

“We wanted to slow down intentionally that growth in (the longer) lower extremity so the shorter side could catch up,” he said.

To avoid causing permanent damage to Zoie’s growth plates, the metal plates will be taken off for a year or so to let her body grow naturally, Kristin said. After some time to regenerate, the plates will go back on.

“It’s kind of a cat and mouse game like that until… she's done growing.” Burgess said. “And the goal is to try to get it so that they're under an inch difference.”

Hemimelia develops about six to eight weeks after conception while the limb buds are developing, according to the Rubin Institute for Advanced Orthopedics. As a congenital disorder, Zoie’s limb length difference and the pain associated with it have been ever-present aspects of her life.

She acknowledged the pain she faces but expressed hope that it will get better. In spite of the difficulties, Zoie keeps pushing forward.

“She's always smiling. She's always motivated,” said De. “She has an infectious spirit and is always optimistic about how this will continue to help her.”

Zoie was nominated by her community and caregivers to be a Children’s Hospital of Colorado Patient Ambassador and shares her story to help inspire other kids who are facing challenges.

hemimelia, bone deficiency, Children's Hospital of Colorado, surgery, athletic, inspiring

Comments

Our Papers

Ad blocker detected

We have noticed you are using an ad blocking plugin in your browser.

The revenue we receive from our advertisers helps make this site possible. We request you whitelist our site.