Kids Health Matters
Topic: Rare Conditions

Take a moment and picture your best friend. They may come into our lives at different times, but everyone has one. How we meet them doesn’t really matter. What matters is finding that one person who truly understands you. That person you can be vulnerable with, who shares in your joy and successes, and helps you through life’s challenges.

When her daughter Amatullah was born, Bisharo Jama knew she would arrive to a loving household stocked with everything she would need, including plenty of hand-me-downs from her siblings. At a few months old, Amatullah seemed just as chubby, beautiful and healthy as her siblings were at her age. But then she started to change in ways Bisharo never anticipated.

It’s funny, you never know at the time when you’re living the day that will change your life forever. But that’s what happened to me four years ago. I work in Community Engagement and Events for the Minnesota Twins and I was volunteering at an event Joe Mauer was hosting for Gillette Children’s Specialty Healthcare, when I saw a little boy sitting by himself on the ground. I sat down next to him and he turned and said: “Hi, my name is Bennett and I love dinosaurs.”I fell in love on the spot.

As loud music filled the adjoining hallways near the Neurosciences unit at Gillette Children’s Specialty Healthcare, passersby could be forgiven if they were a bit confused. The atmosphere was festive and there was good reason for it. At long last, James Bostic, 17, was able to go home. He had been in the hospital for 15 months.

Parents worry. Parents worry about their child’s growth, development, friends, school, future. It’s a universal truth, baked into our biology. When a child is diagnosed with special needs, however, a parent’s worry can snowball into anxiety. That's what happened to me, but here's what I did.

You know, there might be nothing more Minnesotan than lacing up a pair of skates and heading out to the rink. “You bet, you’d better believe it,” says Tony Lang of Loretto, Minnesota. “I grew up playing hockey my whole life. It’s a family tradition. In fact, when we had kids I built a rink in our backyard.”

The hospital can be a scary place for anyone, especially a child, and no matter how nice the staff is or how thoughtfully the clinical spaces are designed, it’s usually difficult for a patient to forget they’re in one. At Gillette Children’s Specialty Healthcare, that’s no longer the case.

Most parents would tell you that having a child changes your life in ways you never could have imagined. That certainly was the case for my husband, Mike and me. Our daughter, Peyton, is now 6 years old, and it’s been a journey of hope, faith and love.

Elliot and his sister Amelia have a typical sibling relationship; they fight, they argue, they push each other’s buttons. But they have a unique relationship as well, that stems from Elliot's diagnosis with a rare chromosomal abnormality.

As he ambles down a long hospital hallway, smiling with every step and practically daring you to do the same, it can be pretty easy to forget that this wasn't supposed to happen. Mateo Arcos was never supposed to walk.

Lisa Evert's "ultimate dream" will become reality this weekend, when Rettsyndrome.org officially recognizes Gillette as a Clinical Research Center of Excellence. The honor is a culmination of Evert's passion for helping her daughter, who has Rett syndrome, and a decade of work by Gillette physicians.

View this new infographic to learn more about Rett syndrome symptoms, treatments and statistics.

A Phase II study (NNZ-2566) of a drug called Trofinetide has potential to minimize the symptoms of Rett syndrome. Learn more and meet one family who is dedicated to moving Rett syndrome research forward.

“They almost didn’t notice it at first,” Karey Hall says. When her daughter Katelyn was born, her left leg was missing two toes and had an abnormal, rainbow-like bend to it. “No one at the clinic had ever seen anything quite like it before.”

Even after an injury heals, sometimes an imprint of it can remain. How this happens varies from person to person. But for some individuals, like Ali Tokkesdal, it manifests in the form of chronic pain. “I couldn’t walk. It felt like my body had turned against me, like it was haunted,” says Ali.

The arrival of the Zika virus in the U.S. has raised awareness of the hidden risk of viruses, particularly those that cause problems for pregnant women and their babies. Zika, however, is only one of several viruses and conditions that can have an adverse outcome on a child in the womb.

Gillette participated in a Twitter chat hosted by ABC's Dr. Richard Besser on rare diseases as part of Rare Diseases Day. Gillette was one of the top chat influencers.