Meet Phoenix: A Children's Wisconsin Champion
Phoenix was born at a local hospital near her home. However, in the first weeks of her life, she was facing challenges with sleeping, meeting developmental milestones and feeding and the local hospital referred her to Children's Wisconsin.
At 3 months old, Phoenix was diagnosed with Marshall-Smith Syndrome, an ultra-rare genetic disorder that only 56 people in the world have been diagnosed with. Most children with Marshall-Smith Syndrome don't live past age 3. Phoenix is now 9.
participating in Family Advocacy Day 2023.
With her rare diagnosis, there was barely any information available and the little there was, became extremely discouraging. "Looking back, the early days after Phoenix's diagnosis and first surgeries for her tracheostomy and g-tube placement were a blur with time moving so slowly and yet everything happening so fast," says Georgina, Phoenix's mother.
Phoenix's family quickly realized this was going to be their new life, filled with visits to Children's Wisconsin, medical professionals and learning together. "Children's Wisconsin provides first-class care so close to home even with the rarity of her diagnosis," says Georgina. "They value treating kids as kids and helping them live their lives to the fullest."
She sees gastroenterology specialists at Children's Wisconsin to support her digestion and nutrition needs. Phoenix experiences challenges breathing and regularly sees pulmonary and otolaryngology specialists at Children's Wisconsin who help her with ongoing trach and respiratory needs, as well as the plastic surgery and complex care team to coordinate specialty care needs.
Phoenix and her family travel to Children's Wisconsin in Milwaukee at least once a month to see several specialists, which coordinate together to ensure convenience. The hospital recently opened a specialty clinic in Appleton, Wisconsin, which is closer to home.
"Phoenix was no stranger to isolating and taking extra precautions during cold and flu season," says Georgina. "But not being able to go to school during the COVID-19 pandemic was incredibly tough on her. She is very social and missed her classmates terribly." Her family was used to being isolated and cautious for a few months at a time, but not this long. However, Phoenix's family found a silver lining in the increase in virtual communication with peers, school and medical providers.
With complex care needs, Medicaid helps cover Phoenix's regular clinic visits and medical care. With Medicaid, Phoenix's parents often experience challenges covering the costs of equipment and have to go through appeals processes to cover items she depends on. The Wisconsin's Children's Long Term Support waiver does help with some expenses, but her parents have had to purchase other equipment out of pocket, like Phoenix's walker.
Today, Phoenix attends school and is fairly stable, with some ups and downs including recent challenges with her breathing. She loves art, including painting, and playing the drums, xylophone and piano. She's a happy kid who loves to laugh, read books, go for car rides and play with dolls and Play-Doh.
Family Advocacy Day
Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.