By Cherylann Taramykin
“I think you need to read this,” Stan Pickens said to his daughter-in-law, Deetra, handing her the latest issue of Lake Mary Life in November 2008. He pointed out an article about Emma Lester, a three-year-old girl who has juvenile arthritis.
Deetra read the article, chilled by the similarities between Emma and Sydney, her two-year-old daughter. Her previously agile tot began falling frequently, walking less and less. Sydney no longer played with the reckless abandon of a toddler; instead, she babied her hands, knees, and feet.
Deetra and Bryan could only guess at what was causing the change in their little girl. The possibilities were frightening − developmental issues, pain, illness. As they searched for answers, Sydney’s joints grew visibly swollen. Her shoes no longer fit.
Deetra set the magazine aside, not believing that her baby could have this disease. Two weeks later, Sydney was diagnosed with juvenile idiopathic arthritis (JIA). “On the day we got the diagnosis,” Deetra says, “I tore through the house looking for that magazine.”
Deetra began volunteering for the Arthritis Foundation. As fate would have it, she met Karely Lester, Emma’s mom, at her first committee meeting.
“I told her how much that article meant to me. It was the reason I was there,” Deetra says.
The Pickens and Lester families became close friends. Karely helped Deetra adjust in the early days of Sydney’s diagnosis; in turn, when Emma’s medicine changed, it was Deetra who helped Karely through it. Sydney and Emma found in each other a friend who understands.
Now five years old, Sydney knows what it means to receive weekly injections of medication, and to travel hours to see her doctor in Gainesville for biweekly intravenous infusions. She knows what it means to be hospitalized. She knows that she needs to be more careful than other kids about getting sick, because her immune system is compromised.
Sydney began working with a therapist at Envision Physical Therapy in Lake Mary shortly after her diagnosis. Seeing her daughter run again – something Deetra didn’t think was possible − fueled her faith in Envision. Sydney has received unparalleled care and attention.
“There’s a certain amount of unconditional love that you have put out there, and as a healthcare provider, you must put out there,” says Judy Serafin, owner of Envision. “When you make that the priority, everything else falls into place.” Inspired by Sydney’s progress, Envision now has a dedicated pediatric corner on the P.T. floor, and provides services to four children with JIA.
Throughout this journey, Deetra identified a need for a juvenile arthritis support network. The impact of that first connection with the Lester family inspired her to found Project Little Star, a nonprofit organization that provides information, direction, and resources to families − particularly those newly diagnosed. It also aims to provide social programs for children with JIA.
Sydney’s 14-year-old sister, Lauren, is a fierce advocate for Project Little Star. Lauren hopes to build a support network for siblings of JIA children. “Lauren lives this disease, too,” Deetra says. “It affects every aspect of her life, and it isn’t always easy.”
In her roles as Arthritis Foundation volunteer and Project Little Star founder, Deetra has had the opportunity to speak publicly about life with JIA. Each time, she brings along her old copy of Lake Mary Life. She shares the story of how Emma and Sydney became best friends, and the healing effect of connecting with other families.
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