It starts with the fat, then goes to the tissue, then the bones, and the brain. Parry-Romberg Syndrome has affected junior Lucy Lant for three years now.
Parry-Romberg Syndrome, also known as PRS, is a condition in which one side of the face starts to deteriorate away. PRS affects roughly one in 250,000 and usually starts in childhood.
Lant found out she had PRS in July of 2020. She started to notice she had scalp problems and loss of hair. Then a pediatric dermatologist diagnosed her with the syndrome.
“We realized it was all just one big problem,” Lant said.
Lant talked to Dr John Siebert, the plastic surgeon who created the surgeries Lant received, and decided to schedule a surgery with him.
Since then Lant has had five surgeries and still has two more to go.
Siebert will take fat and skin from different parts of the body to fill Lant’s face. He takes from the back mostly but also takes from the hip, stomach, and even the cartilage of the ear.
“I don’t take a lot of things for granted. I’m really grateful to feel healthy,” Lant said.
Since the skin is newer on one side of her face, the other side will age slower, meaning she might have to get a face lift when she’s older to even out her face.
However, Lant is a basketball player and the surgeries can affect the season. Freshman year she had a surgery a week before the season and had to miss the first couple of weeks. Sophomore year she only had to miss one game. This year she is trying to schedule around the season so she won’t have to miss any games.
Gym teacher Molly Kleiber had Lant in one of her classes and Lant described her as one of her biggest inspirations.
“I know Lucy is capable of accomplishing anything she sets into motion and despite her battle with Parry-Romberg, I have not seen her give up or stop working towards her goals,” Kleiber said.
Through all of these surgeries Lant has changed a lot in looks and still continually will change.
Kleiber said, “We can make a lot of assumptions about people and their experiences but we will never truly know unless they share with us their struggles. One can only assume her surgeries have impacted her school and work life. Taking time off to recover from surgery is not easy, so being away from your peers and friends is difficult at any age.”
Lant said, “It feels really nice to feel happy about my appearance because I didn’t feel happy about it for a long time.”
Richard Durrans | Oct 7, 2023 at 8:44 am
As one of her great grandpas I feel vey fortunate and privileged to have had her come and visit me. She was actually visiting her grandmother (my daughter) when they drove the extra 75 miles to see me. What a joy she is. So accomplished and at ease with adults. She is an inspiration to all.
Baiba | Oct 5, 2023 at 6:19 pm
What a Beautiful article about a truly brave young girl. Such a positive disposition.