GRACE NOVACHECK, 13, from Texas, has undergone 33 major surgeries in her short life.
Grace has Escobar syndrome, a rare condition which causes joint contractures.
This affects her jaw, neck, arms and legs.
Grace also suffers from scoliosis – where the spine is curved to one side, impacting her mobility.
Doctors were unable to diagnose Grace’s condition for the first month of her life.
Her dad Marcus told Truly that their family’s “journey has been very intense”.
Living with her conditions has meant a childhood filled with hospital visits.
“Every time that we do something in the operating room her genetics want to reverse it," Marcus explained.
She’s also had a spinal fusion, coronoidectomies, a cleft palate repair, plus a jaw distraction and jaw stretches.
Grace needs help with everyday tasks like getting dressed in the morning and putting her leg braces on.
She has also experienced judgement from others.
“One thing that really gets under my skin is when people stare”, Grace said.
Despite these setbacks, Marcus has never let Grace’s condition get in the way of her achieving goals.
“I think the medical world doesn't want to set limitations, and quite frankly, I didn't want to hear them” he said.
“We set our own limits.” She competes in a local volleyball team, films YouTube videos and plays the piano.
“She's really brought us out of our shell and made us embrace life in a lot of ways, she's got an amazing spirit,” Marcus said.
“I'm very proud of Grace, she makes the most of her abilities."