Manatee girl showing 'Grace' under pressure of painful arthritis

rdymond@bradenton.comMay 6, 2014 

MANATEE -- Grace Gustafson loves the TV show "Glee," ramen noodles, singing and acting at the Manatee Players community theater and her best friend, Cara, at Haile Middle School.

The Manatee County sixth-grader also adores Sissie, her black therapy poodle and her "crazy" dog Sofie, and, incredible as it seems, mathematics, even the concept of integers.

What 11-year-old Grace does not love is waking up some mornings with excruciating pain in her chest and rib cage, back, ankles, hips and legs that she describes as "someone squashing them really hard."

Grace has been battling polyarticular juvenile rheumatoid arthritis, an autoimmune disease where her own body causes inflammation and swelling in her joints.

Although Grace has no love for arthritis, she is approaching it with a positive mindset.

"At times, it can be difficult and a challenge," the articulate Grace said earlier this week. "But I feel confident in my attitude, which helps me get through it."

The upcoming Sarasota Walk to Cure Arthritis has named Grace as its Youth Honoree.

Grace said Thursday that she is excited to walk in the dual 5K/1-mile event sponsored by the Arthritis Foundation, which begins at 9 a.m. May 17 at Payne Park, 2050 Adams Lane, Sarasota.

If she can't walk, she said she will roll in her wheelchair to try to help reach the goal of $25,000 raised toward finding a cure for her disease.

"I'm excited to do it," Grace said. "I hope everyone comes out and walks with me."

The public perception of arthritis is not of a disease afflicting children, but, according to the Arthritis Foundation, the disease impacts more than 50 million adults and 300,000 children -- or approximately 22 percent of the United States population.

The disease is a more frequent cause of activity limitation than heart disease, cancer or diabetes, said Michelle Bass, an Arthritis Foundation spokeswoman.

Despite aggressive treatment that include monthly 30-hour infusions of powerful chemotherapy drugs, Grace's doctors have been unsuccessful so far in stabilizing her arthritis, said Grace's mother, Christina Gustafson.

Grace started to develop complex migraines, chest and back pain and swollen fingers after a bout with Lyme disease when she was 6, her mother said.

"The joint swelling and pain started to keep Grace

from dancing and doing normal kid stuff," Gustafson said. "She was no longer able to run around and play with the rest of the kids like she had in the past.

"She has had arthritis in almost every joint in her body," Gustafson added. "There are mornings when Grace is not able to get out of bed without having to be carried. There are days she can't walk due to extreme pain and swollen joints."

Grace has been fitted with a custom wheelchair for her "bad" days and she is in dual enrollment with a hospital home-bound academic program and Haile Middle School, her mother said.

Christina Gustafson is asking the public to help in any way they can.

"We're hanging on and hoping," Gustafson said. "Grace's prognosis is uncertain. They could attempt a stem cell transplant but she could get an infection since her immune system would be reduced. Each case is different, but a lot of kids get this."

The Gustafsons believe three or four Manatee County youths are battling the disease.

Formerly Arthritis Walk, Walk to Cure Arthritis is now the Arthritis Foundation's signature, national fundraising event to prevent, control and cure the nation's leading cause of disability, said Bass.

Stephanie Yax is the Adult Honoree for Sarasota Walk to Cure Arthritis and she is battling Sjogren's Syndrome, Bass said.

Dr. Richard Yonker, with the Sarasota Arthritis Center, is the Medical Honoree.

Funds raised through the Sarasota Walk to Cure Arthritis will go toward programs, research and advocacy initiatives, Bass said.

Despite the distractions, Grace has remained on the Honor Roll, her mom added.

"She loves to perform," Gustafson said of her daughter's love for community theater.

Grace has performed in "The Best Christmas Pageant Ever," "Fiddler on the Roof," "Evita" and "Pippin," to name a few.

"I would definitely love being an actress," Grace said.

To learn more and register for the Sarasota Walk to Cure Arthritis, visit www.awsarasota.kintera.org or contact Michelle Bass at 941-708-3901. To learn more about the fight to cure arthritis, visit www.arthritiswalk.org.

Richard Dymond, Herald reporter, can be reached at 941-745-7072 or contact him via Twitter @RichardDymond.

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