Meet Jordan, who is ‘beautifully rare’
Born with a rare vascular disorder, Jordan has visited Children’s Health℠ to receive care her whole life. Despite all the challenges and complications, she continues to smile and be joyful.
At just 2 days old, Jordan went on her first ambulance ride. She looked tiny next to the Children’s Health paramedics, who gingerly looked over her on their way to Children’s Medical Center Dallas.
Jordan’s mom, Amber, knew her daughter would be born with a medical condition. A couple of months earlier, a specialist at the health system’s Plano campus had given her a list of a dozen or so possibilities. They wouldn’t know her diagnosis until further testing after her birth.
Although Jordan’s condition remained a mystery for her first two weeks, her care team in Dallas worked tirelessly until they confirmed her diagnosis — Parkes Weber Syndrome, a rare congenital vascular disorder that primarily affects limbs (usually legs), causing soft tissue/bone hypertrophy, pain and high-flow vascular anomalies.
“It makes me have, like, a bigger leg versus a regular leg,” Jordan, now 9, said. “I was born with it, and I’m really special. It’s really cool to have this condition.”
Surprisingly, it was the rarest condition on the list they’d given us. We’re beautifully rare.
— Amber, Jordan's mom
The right place for Jordan
At first, the family’s health insurance provider would not cover Jordan’s care at Children’s Health because they considered the hospital out-of-network. Her mom, however, had done the research — and she refused to take no for an answer.
“I just knew in my heart that Children’s Health was the right place for her, for the care she needed,” Amber said. “It was the best decision we ever made. It was a fight, but it was worth it. Other places didn’t have the resources we needed for Jordan.”
Almost immediately, after overcoming that hurdle, Jordan and her mom had an incredible care team behind them they could trust.
Over the years, the two have grown close to the child life specialists who help brighten their days with music or art therapy, playtime and other activities that allow kids like Jordan to keep being kids while hospitalized. Services like these are one of many supportive offerings at Children's Health that are made possible by generous donors.
“We’ve done a lot of fun things together,” Jordan said. “We get to, like, play jokes and share fun stories. I bring card games to play while we’re in the hospital and teach them how to play. It’s really, really fun.”
They’ve also built strong bonds with their physicians and nurses, who take the time to listen to Amber’s concerns and take them seriously. Their consideration has allowed them to identify issues early, preventing worst case scenarios.
I’m really grateful for the team they’ve developed for us. It has allowed me to be more confident in the overall care of Jordan. They are very loving. They’re kind. They treat Jordan with so much joy. They’re experts at what they do, and they make the hard things fun.
— Amber, Jordan's mom
Ensuring Children’s Health is prepared to meet the unique and most complex needs of kids like Jordan from across the nation for generations to come, the health system is building a new Dallas pediatric campus. The new campus will provide the foundation needed for innovative research, lifesaving technology and treatments that will make the impossible possible for more families.
“The big, red balloon is such a great symbol that reminds us that there are people who care, and that there’s a hospital that has the doctors and resources you need,” Amber said. “The more Children’s Health grows and expands, the easier it’ll be for families to find that balloon and get the help and care they might need.”
‘A beautiful journey’
Jordan isn’t a stranger to the colorful corridors of Children’s Health. The complications she’s experienced due to her vascular condition have meant constant visits to the hospital for emergencies and checkups. Once, for example, she spent an extended stay at the Plano campus after experiencing septic shock from a blood infection.
Despite the challenges that come with Jordan’s rare condition, she and her mother don’t let the tough times overshadow the incredible moments they’ve gotten to experience.
“It’s a beautiful journey, despite how hard it can be at times,” Amber said. “Jordan is always full of joy and brings so much light to those around us.”
While recovering from a surgery at 4 years old, Jordan made her way down to Seacrest Studios, the hospital’s own interactive TV and Radio production studio. Unaware of her imminent fame, she made up a song and performed it with all her heart.
After team members sent a video of Jordan’s impromptu concert to Ryan Seacrest, whose foundation established the studio, he shared it on his social media accounts for his millions of followers to watch.
Overnight, Jordan had gone viral online. People poured in comments of encouragement and support for the tiny singer, and all the American Idol judges commented, “It’s a yes for me, Jordan!”
“She’s a little bit famous,” her mom said. “Jordan’s eyes light up, her smile lights up, when she gets to be around music.”
One year, Jordan’s care team nominated her to help spread joy during the holidays at the Plano campus — her bubbliness made her the perfect candidate.
After meeting Santa Claus and waving at the crowd that had gathered around the tall Christmas tree, Jordan switched on its colorful lights, illuminating everyone’s smiles.
That spark of joy was an incredible moment that Jordan and her mom will never forget.
“It was really fun,” Jordan said. “I asked Santa all different questions, like what’s his favorite reindeer and how many elves there are.”
Dreaming big and thinking positively
There is currently no known cure for Parkes Weber Syndrome, and the rare vascular disorder is progressive, which means Jordan will continue facing challenges as she grows up.
Her care team mostly focuses on making sure her heart is in good working order, managing her symptoms and slowing down the overgrowth of her leg — all while Jordan focuses on dreaming big.
Now 9 years old, Jordan wants to be a singer, dancer or “be in theater a lot” when she grows up, she said.
“I love meeting other people, especially other dancers and singers,” she added. “It’s a really powerful way to make friends.”
Jordan continues to inspire those who meet her with her unwavering resilience and infectious joy. She admits when things are hard but can immediately find the good in the toughest moments.
We always think of the positives; we always do our best. Jordan does a really good job of being real with who she is. She’s full of light and joy. She makes people smile.
— Amber, Jordan's mom
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