Sherwood Oaks Christian Church will soon host One SMALL Step, a fundraiser for the Foundation for Prader-Willi Syndrome Research. Local resident Sarah Peden, whose 3-year-old daughter Lillian has the rare genetic disorder, organized the event.
There will be five bands, craft vendors, face painting, carnival games, Frisbee golf, raffle prizes, a silent auction and a 1-mile family fun walk for the “Outdoor Summer Fest with a Cause.”
Many of the symptoms of Prader-Willi syndrome, including speech apraxia, low muscle tone, short stature, and below average IQ, can be overcome through therapies or drug treatment. The main symptom cannot be cured or treated.
“Unfortunately, the main symptom of Prader-Willi syndrome – insatiable appetite,” Peden said. “There’s really no way to control it other than distraction and locking up cabinets and refrigerators.”
“When Lillian was first born, there was no drug that they were looking into,” she continued. “Now there’s 77, so the need to raise money has grown tremendously.”
Testing the medications is important because one of them may cure or treat the insatiable hunger of Lillian and others, enabling them to live independently.
As it is, Peden said, “I think that, if you have a child with Prader-Willi syndrome, you just have to accept the probability of outliving them.”
Despite the challenges their daughter faces, the Pedens have been able to adapt. Lillian is even able to ride horses.
“The one thing that I always try to get across is that we just want people to accept Lillian as she is,” Peden said. “She is a fun kid. She has friends. She is different, but not in a bad way.”
One SMALL Step will be the fourth such event Peden has organized. So far, it has raised $8,000 through sponsorship from: Choice Realty, Myra Raake, Rake Cabinet and Surface Solutions, B-town Flea Market, ms consultants, Merrill Lynch – David Morgan, Royal South Toyota Scion, Smithville Communications, Bloomington Pediatric Dentistry, First Republic Mortgage Corp., Morgan Stanley – Philip Williams, and the Prader-Willi Syndrome Association of Indiana.
The other three events were called “Running for Lillian” and staged in bigger cities. The family raised $30,000 for the Foundation for Prader-Willi Syndrome Research through them.
One SMALL Step will be held June 8 from 10 a.m. to 3 p.m. at the Sherwood Oaks Christian Church parking lot. It will be moved inside the church if there is rain.
Originally published in Ellettsville Journal, 2013. Republished here for archival and portfolio purposes.