Miss (and Ms.) Amazing
Meet Ellasyn Berry of Little Chute, Wisconsin. At 13 years old, she is a rollercoaster rider, a swimmer, a Bath & Body Works shopper, a future anesthesiologist, and living every day with McCune-Albright syndrome (MAS) and Polyostotic Fibrous Dysplasia (PFD).
Ellasyn is surrounded by family that she lovingly describes as “chaotic.” Mom (Leah) works for the Girl Scouts, and dad (James) works in technology for a company that manufactures coffee pods. The eldest child is Ellasyn’s half-sister, 19-year-old Allie, then Ellasyn, then her brother Paxton who is 11, next is a foster brother Gabe, and joining the family is a respite child (a child who needs a temporary safe space)—15-year-old Kailey. Not only does this family embrace a member with FD/MAS, but also a loved one on the autism spectrum and one undergoing gender transition.
And if that isn’t enough, mom Leah is a tireless advocate for patients with growth disorders. She currently serves on the FD/MAS Alliance Board of Directors and has worked in the past with a growth disorder organization called the MAGIC Foundation.
Leah uncovered Ellasyn’s FD/MAS diagnosis by searching the internet. At three months old, Ellasyn wasn’t eating much, showed signs of precocious puberty, and had a birthmark on her skin. Because she was so young, doctors didn’t believe the diagnosis but eventually found excess amounts of estrogen and a tumor. They subsequently removed one of Ellasyn’s ovaries. The official diagnosis came after that first surgery.
Ellasyn uses a wheelchair but can walk for short distances. Even though the MAS/PFD affects 94% of her body, the use of a wheelchair is the most visible sign of the disease. High tolerance for pain and a sunny outlook has helped her weather surgeries on her legs and other medical procedures. Recent surgery on her legs should have Ellasyn walking longer distances by the end of the summer.
According to Leah, the past two years of Covid restrictions had a silver lining—increased options for online classwork and telemedicine. “Not getting in a car has been great,” states Leah. “It makes it so much easier for us to work, go to school, and deal with health issues.”
Ellasyn lives her life with determination and delight. Her parents drive her to school, where she uses a manual wheelchair, but she does everything else herself. Her mother notes that “her middle school friends are awesome. Kids don’t care—color, race, differences—Ellasyn is just Ellasyn to them.”
After learning how to swim in therapy, Ellasyn is interested in trying out for the swim team. She found t-ball fun and plays volleyball with her foster brother Gabe, so she looks forward to learning other sports, like softball. She has a lot of friends too. “I’m shy at first,” says Ellasyn, “but open up to people over time.”
This spring, Ellasyn was crowned Wisconsin’s Miss Amazing through a pageant-style competition that invests in and empowers young women with disabilities. The pageant is formed with the idea that girls with disabilities are often held back from taking risks that could enrich their personal development. They deserve every opportunity to grow and shine that children without disabilities are offered. Ellasyn has been competing in pageants since she was six years old, but this is the first year she has competed in her wheelchair. “She was nervous,” says her mom, “but she truly shined!” Now she’s headed to Nashville in July for Nationals!
Words of Wisdom from Ellasyn
“Don’t be scared to show your scars. This happened for a reason—so I can help others. No one is perfect and if we were all the same, it would be boring.”
Ellasyn’s mom Leah found FD/MAS Alliance on the internet. With the encouragement of a doctor, Leah became an active volunteer, which is how she became a member of the FD/MAS Alliance Board of Directors.
Going to conferences and meeting others with the same symptoms or the same diagnosis has been a wonderful benefit of the Suprise family’s participation in patient advocacy groups. Whether in Washington, DC, or Chicago, the events are organized (freeing up mom and dad). The kids get to be regular kids—participating in field trips, repelling off rock climbing walls, swimming in the pool, and enjoying the hot tub. Leah remembers one event where a bride and groom at the same hotel were so overwhelmed by the beauty of the kids with wheelchairs that they invited them to join their wedding reception.
Words of Wisdom from Leah
“Live and enjoy the moment otherwise you’ll lose time with your child or loved one. As parents we can’t keep them in a bubble. Patients need to live their life, so give them skills to make every day a good day.”
Leah has found being a member of the FD/MAS Board of Directors both enriching and empowering. She loves advocating for patients, parents, and families and knows that the organization helps ease the news of a new diagnosis with information and community support. Leah’s Board service comes to a close this year, but she remains an active voice and a determined advocate for her daughter and all those who suffer from FD/MAS.
Special thanks to Caroline Fuchs, CAE, for bringing Ellasyn and Leah’s stories to light.