There are plenty of motivations to inspire someone to push themselves 13.1 miles.
For many, it’s the desire to lose a few pounds or get in shape.
For others, it’s a chance to share an experience with friends.
For some, it’s a precious little girl who is dealing with far more than two to three hours of physical exertion.
Kelley Norris is running in her first race at today’s Augusta Half Marathon for 5-year-old Frances Brown. She and 26 other “Friends of Frances” are participating to bring awareness to Brown’s genetic syndrome and other rare diseases.
“It’s a lofty goal of mine,” said Norris, 39, who started running the week after Christmas, “but compared to the obstacles that this little girl has overcome it’s nothing. She is a fighter.”
Frances Brown is an adorable and happy girl like any other at Lake Forest Hills Elementary School, where she is a part of the deaf and hard of hearing class. She loves her friends and music and dance and dressing up like a purple butterfly for Halloween.
Only Frances is not like any little girl you’ve ever known. She is one of only 130 known people in the world to be diagnosed with Macrocephaly-capillary malformation (M-CM) – a multiple malformation syndrome that causes atypical body and head overgrowth as well as abnormalities of the skin, vascular system, brain and limbs. Since she was 6 months old, she’s undergone 14 operations, most of them neurosurgeries. She has one arm and leg larger than the other, has wine-colored “freckles” that intensify with her mood, suffers from occasional seizures and communicates mostly through sign language.
But Frances’ undaunted personality melts the hearts of anyone she touches.
“My family met Frances three years ago and have been blessed with her tenacious spirit ever since,” said Norris.
The 27 “Friends of Frances” will wear bright orange T-shirts in today’s race, as will 23 spectators lining the course. The shirts include a logo with the sign for “F” over a heart, the way Frances signs her name. It also bears the phrase, “Hope, it’s in our genes,” the slogan for the Rare Disease campaign which holds its awareness day on the rarest of dates, Feb. 29. There will also be a tent with orange balloons near the finish line with information on rare diseases, half of which affect children.
“I hope the awareness brings more acceptance to differences among people,” said Frances’ mother, Ashley, who has endured her share of stares, pointed fingers and whispers when people are unfamiliar with her daughter. “I hope people will talk to children about it and let them ask questions that may seem curt to us. They’re children and resilient and they just want to know and then they move on. If we foster that in our children they will grow up to be individuals who understand.”
Frances’ special needs require vigilance. She is treated from Augusta to Atlanta, followed closely by her pediatrician and several specialists with routine visits and MRIs every six months. She sees physical, occupational and speech therapists every week.
Among her 14 surgeries are three Chiari decompressions to relieve pressure on her brain stem, two brain shunts and a spinal shunt. The last year has been the most difficult since she was diagnosed at 5 months, with multiple surgeries last fall. All Frances cared about was being able to put makeup on and dress up as a “beautiful butterfly” for Halloween. She couldn’t walk from door to door in the midst of four neurosurgeries, but she got her wish.
“To me it was so priceless that that’s what her goal was and that’s what she wanted that more than anything,” her mom said.
Norris, a pediatric pharmacist at MCG Childrens Medical Center, sees these kinds of families dealing with health issues every day. But Frances, her brother John T. and parents Ashley and John-Clark have particularly touched her family. Her husband assisted special needs children in the Tri My Best Triathlon last spring, with her kids running beside Frances riding her tricycle.
“She’s excited to come watch our race like we watched her race,” said Norris, who is determined to finish the 13.1 miles on her sore knees no matter how long it takes.
Race officials gave Norris clearance to have Frances accompany her at the end of the race.
“I am so excited that they are going to let me push her across the finish line,” said Norris.
They are excited for that moment to draw attention to Frances and the millions of others who suffer from rare diseases.
“I hope the more we talk openly, the more kids grow up not thinking it’s so weird to be different,” said Brown.