- Meet Consumers/Patients
|2001 Oley Award and Scholarship Winners|
LifelineLetter Annual Award
Stephanie has been unable to eat and HPEN dependent since 1996. For 33 years she was without a diagnosis, and underwent a constant barrage of procedures and tests. Rather than wallow in self pity, she fit her medical needs into the family’s busy routine and continued the job of raising five boys and building a business. In 1997, she and all five boys were diagnosed with Eosinophilic Gastroenteritis (EE). Now fed via G-J tube, Stephanie has tackled the physical, emotional and management challenges of her own battle with EE while guiding her sons through their challenges. Her courageous attitude has enabled her to keep on top of five different tube fed consumers, formulas, feeding schedules, pumps, doctors appointments etc.
As if this weren’t enough, in March of 2000 Stephanie started a non-profit organization, the National Eosinophilic Enteritis Disease Foundation (NEED), where she provides support and education to hundreds of families afflicted with eosinophilic GI diseases and assists with research efforts. She also advocates on behalf of homePEN and NEED families with policy makers and health care providers. For her non-stop, can-do attitude, despite an overwhelmingly challenging load, we are honored to present Stephanie with the 2001 Oley LifelineLetter Award.
Oley Foundation Young Adult of the Year
Diagnosed with Hypoganglionosis, Alicia has been on HPN, and sometimes HEN, since birth. Like most consumers, Alicia has had numerous medical problems and hospitalizations, yet she is always positive about life and helpful to other lifeliners. A recent second diagnosis of SMA Syndrome, and the associated pain and fatigue, meant Alicia missed most of her freshman and sophomore year of high school, but she continues to make the honor roll and has been inducted in the National Honor Society. After school, she volunteers her time for a number of organizations, including Oley, SADD, and the Youth Advisory Council at Children’s Hospital in Philadelphia.
Alicia is an upbeat, outgoing young woman, who wears a warm, friendly smile, day in and day out. She strives to lead as normal a life as possible, and until she became famous on the front of the Oley brochure, many conference participants didn’t realize she was a homePEN consumer. As a new Regional Coordinator, Alicia networks with other Oley youth and has started a web site where they can post information. She is buzzing with ideas and hoping to implement more of them as the SMA Syndrome resolves. Alicia is a real asset to the Oley family, and we are happy to recognize her with this award.
Paul Butzin, Graytown, OH; Corey Hald, Kakabeka Falls, ON; Caroline Krajicek, Spartan, NJ; Angela Mitchell, Bryan, OH; Colyn Woods, Hemet, CA
Mead Johnson Enteral Award
Kathleen’s battle with multiple sclerosis led to motility problems and enteral feeds seven years ago. A desire to help others in a similar situation prompted Kathleen to join Oley’s Regional Coordinator network. As an RC and volunteer for the Oley toll-free line, she offers reassurance, information, resources and tips on problem-solving to consumers who call on her. She also runs a support group with Tim Joyce, and shares her experience with lifeliners through the Tube Talk column.
Multiple health problems, including mobility and visual impairments, don’t slow her down. Quick to volunteer whenever there is work to do, Kathleen is always willing to learn and willing to share what she has learned. And on those occasions when she doesn’t know the answer to a caller’s question, she researches the issue or finds them another resource. As one of her nominators said, "There is always kindness in her voice and a smile on her face, no matter what her own circumstances are, which is comforting for the families that call on her in their time of need or frustration. She’s been a real inspiration to me, and an unwavering source of support.”
Lenore Heaphey Grassroots Education Award
Malisa has been on HPN and sometimes HEN for more than nine years because of pseudo-obstruction. Despite serious medical setbacks, Malisa participated fully in her demanding nursing program, and graduated on time this May. Even more impressive is the time and energy Malisa has dedicated to supporting homePEN consumers locally, nationally and even internationally. She spends countless hours on phone calls, e-mails and visits, and always takes the extra step to connect consumers to other consumers who have been through a similar situation.
Malisa has organized numerous outings for teenagers and young adults who depend on HPEN, and was instrumental in getting HPEN kids to summer camp, where they built confidence, made friends, and gained independence. Malisa has also run sessions at the Oley Conference for children, teens and young adults where they could speak openly and frankly about their experiences on HPEN. She is a powerful and positive role model for consumers of any age, and more than deserving of this year’s Lenore Heaphey Grassroots Education Award.
Barbara Klingler, Malabar, FL; Carol Pelissier, Manchester, NH; Patty Woods, Hemet, CA
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