Super Sparkle
Prenatal appointments are a routine part of a healthy pregnancy. It was during one such appointment that Kainoa Friel and her husband, Calen, received some unexpected news: a 3D sonogram revealed that their unborn baby, Haumea, had a condition called proximal femoral focal deficiency (PFFD). This birth defect, which affects about 1 in 200,000 children, causes the upper part of the femur bone to be either malformed or missing.
Because of this, Haumea was born with one leg shorter than the other. But she has continuously defeated the odds, and triumphed over adversity, when it comes what she calls her “super leg.” Now five years old, Haumea continues to to spread her message of courage and strength, as she has throughout her journey. That spirit will serve her well as as the Children’s Miracle Network (CMN) Champion for Kapi‘olani Medical Center for Women & Children.
In her role as Kapi‘olani CMN Champion, Haumea will share her story throughout the year, aiming to inspire community partners, as well as other supporters who are committed to the health and well-being of Hawai‘i’s keiki.
“We have been with Kapi‘olani since day one,” Kainoa says, “and Haumea’s ‘dream team’ has always been there for us.”
She’s referring to the experienced, multidisciplinary group at Kapi‘olani, which created a customized plan of care for this rare condition. Through
it all, Haumea has shown tremendous tenacity, and continues to progress every day. She has undergone more than 10 surgeries to date, most recently a complex and specialized 16-hour procedure called rotationplasty.
“The rotationplasty basically turns the limb around. So the knee she has functions as a hip for her, and foot that she has functions as a knee, [which] can be fitted with a prosthesis,” explains Dr. William Burkhalter, Kapi‘olani pediatric orthopedic surgeon.
Haumea’s treatment includes physical therapy at Kapi‘olani, where she’s learning to walk on her own. She says that her ultimate “favorite person” is Aunty Stacie, who leads her physical therapy at Kapi‘olani’s Rehabilitation Department. “She showed up twice week to do new things, every time with a great attitude,” says Stacie Keliinoi, physical therapist, impressed by the work Haumea has done to relearn movements now that her foot is in a new position. “Haumea’s now walking on the treadmill saying, ‘Aunty Stacie, I want to learn how to run.’”
Haumea’s prosthetic leg has become something of an icon unto itself, informing the look of her Champion pin. The custom design, which she helped create, is a purple heart outlined in pink—her favorite colors. The glittery purple matches the color of Haumea’s new leg. Two feet facing opposite directions represent her rotationplasty; the heart is a tribute to the love that surrounds Haumea and her ‘ohana. She will certainly make for an impressive ambassador for Kapi‘olani.
“She’s named [her prosthetic leg] ‘Sparkle,’” says her mother. “Haumea is proud of who she is. She is one of the strongest people I know.”
To which Haumea is happy to add: “Sparkle is my prosthetic leg that can help me walk and run and bounce. Nothing can stop it.”
Want to get involved? Visit give2kapiolani.org