Will Butts, 6, understands that people are recognizing him “for being brave.”
In his short life, he’s not only overcome the debilitating effects of a rare disorder, but he’s also inspired many people along the way.
On Wednesday, Mother Frances Hospital officials announced that Will has been named the 2014 Children’s Miracle Network Hospitals Champion for the state of Texas. It’s a first for Mother Frances, which is among the 16 network hospitals in Texas and the 170 across North America.
Mayor Barbara Bass was on hand to acknowledge Will and read a proclamation declaring Wednesday as Will Butts Day.
“He is a remarkable young man, from Kool-Aid stands to the many ways he has helped fund-raise for other children in need,” she said. “He has been just an absolute light for all of us on how to give back to our community.”
Before birth, Will was diagnosed with Hanhart syndrome, a defect that affected all four of his limbs. He was born without feet and with partially formed hands.
It doesn’t slow him down, though. Will defied all odds, as doctors believed he wouldn’t be able to run and jump without ankles.
The curly haired high-spirited boy can do that and then some, as evidenced by his quick lap around the room following a press conference. He plays sports, and according to his parents, makes the most mundane activity fun with his never-ending energy.
He recently learned to write in cursive and is loved by those who come in contact with him.
He’s got a big group of supporters, including teachers, family and friends. They showed up to witness his moment in the spotlight Wednesday.
“I’m so proud of him because he can do anything the other kids can do,” said Sherri Harden, Will’s kindergarten teacher. “Even though he has hand and feet differences he has proven himself to do anything they can do. I think it’s exciting that he’s our first (state ambassador).”
As ambassadors, the family will advocate for services to special needs children. Will and his family will also travel to Washington, D.C., in November where all Children’s Miracle Network state ambassadors will meet President Barack Obama. They’ll also go to Disney World.
As for his D.C. trip, he’s more interested in seeing the first dog than challenging the president to a race.
“I want to meet Bo,” he told the audience.
Hospital officials said 62 children seek care every minute at Children’s Miracle Network hospitals.
The network raises money and awareness, providing $32 million for treatments annually to children across the U.S. and Canada. Since 1983, member hospitals have raised more than $4.7 billion. Donations remain local to fund treatments, pediatric medical equipment and charitable care. The organization fully funds the special needs clinic where Will receives care.
Parents Katie and Reagan Butts have been associated with Children’s Miracle Network for a few years now. In 2011, Will, along with their 3-year-old daughter, Ellie — who also has a rare disorder that limits the range of motion in limb joints — was the face of Children’s Miracle Network Mother Frances and lit the downtown Christmas tree.
Robin Rowan, Children’s Miracle Network director for Trinity Mother Frances Hospitals and Clinics, nominated Will for the honor.
“For us, the joy in it is the recognition for Will and his family,” Ms. Rowan said. “They’re amazing ambassadors already for Children Miracle Network. For him to be selected is such an honor for us.”
Butts said the journey with their children has been filled with ups and downs, but is a blessing nonetheless.
“The hardest part for us is not having a guidebook or a plan,” Butts said. “We don’t ever know what’s going to happen one day to the next ... You just have to take it one day at the time. You just have to plan what you can and just realize that there’s going to be new adventures every day.”
He added, “We’ve always known that both Will and his sister, Ellie, are both very courageous in what they have to deal with on a day-to-day basis and we’ve always been amazed. Will has taught both my wife and I so much about what it takes and what it means to be brave.”
Mrs. Butts noted that Will isn’t defined by his disability.
“It’s part of Will and parenting Will, there’s a lot of fun with that,” she said. “It adds an element as far as doctors and hospitals and therapies. But that is not all of Will. He’s just Will. He’s a lot of fun to be a mom to.”