- Meet Consumers/Patients
|2009 Oley Award and Scholarship Winners|
2009 Oley Awards and Scholarship Winners
LifelineLetter Annual Award
In Honor of Nutrishare, Inc., Oley Platinum Partner
The LifelineLetter Annual Award is given to a homePEN consumer or caregiver, aged nineteen or older, who has demonstrated courage, perseverance, a positive attitude in dealing with illness, and exceptional generosity in helping others in their struggle with homePEN. This year the award was presented to Mariah Abercrombie.
Mariah was diagnosed with pseudo-obstruction syndrome when she was only three years old, and has had a central line, a G-tube, and an ileostomy most of her life. Today, despite ongoing health issues, setbacks, and a dependence on home parenteral nutrition (homePN), Mariah is a senior in college who hopes to go on to get a master’s degree. Mariah is only two semesters away from a diploma, and last semester she made the dean’s list.
Mariah has organized and coordinated several youth activities at past Oley conferences. “I can’t say enough about how important the conference is to me and my family. It is an annual event we look forward to each year,” she says. She has also been a driving force behind Oley efforts to promote the Paul Newman summer camp experiences for Oley members.
At a very young age Mariah began sharing her experiences through formal presentations and roundtable discussions at professional meetings to create a better understanding of the issues and concerns specific to those growing up on homePEN therapies. Her willingness to share has always been extremely helpful for parents who are striving to understand the challenges of being a child/teenager/young adult who is dependent upon homePEN.
“Receiving the LifelineLetter Award was a great honor,” Mariah says. “I appreciate the recognition. In addition, I am grateful to Oley and the wonderful staff for arranging such a wonderful conference. As always, this year’s conference was both educational and fun. Despite a little rain, I had a wonderful time catching up with old friends and making new ones.” She adds, “I encourage anyone who is thinking about attending to take the plunge. It’s a wonderful opportunity and you won’t regret it. See you in New York in 2010!”
Mariah exhibits all of the qualities the LifelineLetter Award was designed to recognize. She well deserves it. Congratulations Mariah!
Oley Foundation Child of the Year
In Honor of ThriveRx, Oley Golden Medallion Partner
“Emily Koprucki is a wonderful young lady who has always dealt with the issues surrounding her homePEN with a smile and a determined attitude,” says a Koprucki family friend. Now fourteen, Emily has learned how to manage her own care and to advocate for herself wherever she is—at school, at the hospital, or while participating in Girl Scout trips and activities.
“I have tried really hard to never let my medical stuff get in the way,” writes Emily. “Last year, I hit a really big road block. I started needing IV hydration more during the day, and my school district was not ready to have a kid walking the halls of the middle school infusing! My mom, my doctor, the school nurse, and my guidance counselor all understood how important this was for me, but everyone else was afraid to let me do it. I ended up meeting with the director of nursing for our district, and once I showed her that I was more than able to do this, she was willing to help us fight. We finally got it approved, and I have been able to go to school while ‘on line’ every since. No one notices, unless I start beeping, of course!”
“At school and Girl Scouts, Emily is ready and willing to educate everyone on her condition and homePEN,” says a friend. Emily’s mother tells the story of when an elderly neighbor came home from a serious hospitalization with an ostomy. Emily “decided she needed to go talk to him.” According to the man’s wife, Emily’s “upbeat perspective changed his whole attitude about life as an ostomate. The more Emily reaches out to others,” her mom continues, “the more confident she has become.”
At Oley conferences, Emily helps other teens and children feel welcome and comfortable. She is willing to share her story and to lend an ear, both of which encourage and inspire others. One Oley Regional Coordinator (RC) tells how she spoke with the mother of a nine year old who was on homePN and had never spoken with or met another child in her situation. The RC remembered being impressed by Emily at an Oley conference and called Emily’s mom, who assured her that Emily would call the girl. Emily already corresponded with several other children on homePN, she added. “Emily did call the girl,” the RC reports, “and they have been communicating ever since. When I followed up with the girl’s mother, she was very grateful for Emily’s efforts.”
“All I can say,” says Emily, “is if you want to do something—GO FOR IT!” We’re so proud to have you as part of the Oley community, Emily, and we’re very pleased to congratulate you on receiving the Child of the Year Award!
Celebration of Life Award
In Honor of Coram Specialty Infusion Services, Oley Platinum Partner
We were pleased to present the Celebration of Life Award to Robin Lang at the annual conference. “If you have the pleasure of knowing Robin Lang,” says one of her friends, “you know what celebrating life is all about….Robin is here to live life to the fullest.” Robin has been on home parenteral nutrition (homePN) for almost thirty years, but she hasn’t let it, or her underlying health issues, stop her. She is known for her great sense of humor (and in fact was a professional clown for twenty years), her concern for others, and her many interests and hobbies.
Robin served as one of the original Oley volunteers and has been to many Oley conferences. In 1986, Robin, as Peaches the clown, entertained everyone at an Oley picnic. For her activities as an Oley Regional Coordinator, Robin received the Lenore Heaphey Award in 2000. She also received the LifelineLetter Award, in 1997.
Lately Robin has been busy having her dream house built in Friendship, Maine; settling into her new home; and planting gardens. Now an established member of her new community, Robin planted a flower garden for the local church, of which she is also now a member. To keep the garden growing, Robin is starting a gardening group at church.
If Robin isn’t in the garden, she might be in the kitchen or in the woods near her home. She enjoys cooking for friends and neighbors, exploring the outdoors with her dog, Doodle, and traveling. She also enjoys painting. Several of her watercolors were included in a community art show on Friendship Day, and a watercolor she donated was the object of heavy bidding at our silent auction at the annual conference.
One of Robin’s nurses noted, “Despite illness, Robin always has a smile and is genuinely interested in the lives of those around her, extending herself to console, consult, and listen.” Robin is quick to acknowledge the support she has received through the years, and to show gratitude, as shown in the comments she made when she received the award: “I’d like to thank my Oley family,” Robin said, “and Joan, Cathy, and Roz [Oley staff] for years of support. I get my strength through my Oley family. I want to say thanks to my immediate family, too, for all their years of support!”
Friends, family, community; making others laugh; pets; painting; gardening; and cooking—these are just some of the many ways Robin keeps busy, living life to the fullest. Congratulations Robin!
Lenore Heaphey Grassroots Education Award
Sponsored by Kimberly-Clark, Oley Blue Ribbon Partner
Davria & Steve Cohen
Lenore Heaphey was hired when the Oley Foundation was founded in 1983. She brought with her many years of administrative experience and an unmatched amount of energy and enthusiasm. Lenore quickly recognized the importance of our Regional Coordinators as the “face of Oley” in different regions of the country. When Lenore left Oley to pursue a law degree, it seemed only fitting to name an award in honor of her outstanding contributions.
This year we were pleased to present the Lenore Heaphey Grassroots Education Award to a husband and wife Regional Coordinator team, Davria and Steven Cohen. Davria (Davi) has been on homePEN for over twenty-five years. She has short bowel syndrome due to injuries sustained in an automobile accident. She and Steve are always available to reach out and educate others about Oley, and about what it means to be dependent on homePEN. They have spoken at Oley conferences, as well as at meetings of the National Association of Vascular Access and the American Society for Parenteral and Enteral Nutrition, and often volunteer to answer calls to the Oley toll-free phone lines.
Davi and Steve are also utilizing another, relatively new venue to offer help and support to homePEN consumers and caregivers: the Oley Foundation online forum. The forum is proving to be very popular, and is a great way for people to connect. “Davi and Steve are very active in the forum discussions, frequently offering support and advice,” an Oley member said in nominating them. “It’s appropriate that their screen name is daviandsteve as the two of them together make a formidable pair.” Davi is willing to share her extensive knowledge of the nutritional and general health issues confronting long-term homePN consumers, and Steve is always willing to listen and talk to spouses and/or caregivers.
As Davi received the award, she commented, “This award means a lot to me, because Oley means a lot to me. So many Oley RCs have inspired me. They have reached out to me and given me advice and comfort. I am an RC because I want to give back to the community.” Steve added, “Oley should be an acronym for ‘Organization for Learning to live Effectively,’ with the ‘y’ for ‘You,’ all of you who have become part of our family.”
To quote the nomination form, “We are thrilled to have them give their great insight and energy to Oley members.” Thank you, and congratulations!
Nan Couts Award for the Ultimate VolunteerCoordinated by Judy Peterson, RN, MS
Throughout her life Nan Couts volunteered for many groups, including the Red Cross. She founded Grossmount Hospital in San Diego in the 1950s. Nan taught her granddaughter Judy Peterson the meaning of volunteerism, beginning with having Judy help out at a senior home when she was ten. Judy says this is when her interest in nursing began. We are proud to honor clinicians in the homePEN or related field who demonstrate willingness to give of themselves—beyond their regular work hours—with an award in Nan’s name.
This year the Nan Couts Award for the Ultimate Volunteer was presented to Linda Gravenstein. Linda currently works as a consumer advocate with the home healthcare company Coram Specialty Infusion Services. She has many years of experience with homePEN as the mother of a young woman, Megan, who has been on homePEN for over twenty years.
Linda’s experiences with Megan have helped prepare Linda for her role as a Coram Partner/consumer advocate, but it is her willingness to give so much of herself that makes her stand out. She reaches out to anyone who may need her, and devotes much of her personal time to helping homePEN consumers find solutions to problems or better their lives. And she approaches it all with a great attitude.
Linda was one of a group of homePEN clinicians, consumers, Oley members and staff, and company representatives who attended Capitol Hill Day in Washington, D.C., in the spring. The event was organized by the Digestive Disease National Coalition to help put a face to those suffering with digestive diseases and on home nutrition therapy. These volunteers met with their—and your—elected representatives to help them understand what it is like to live with a chronic illness and to be able to receive nutrition therapy at home. This is an important event, as it helps these representatives make more informed decisions on bills that may affect homePEN consumers. Way to go, Linda! Keep up the good work!
Kyle R. Noble Scholarship Winner
Coordinated by Donna & Richard Noble
Kyle R. Noble’s enthusiasm for life affected many positively, and he is remembered widely with affection and admiration. Kyle passed away in 2006 at the age of eight. In 2007, the Noble family established the Kyle R. Noble scholarship to recognize others who share the admirable qualities for which he will be remembered. This year’s recipient, announced at the Oley Conference in St. Petersburg, Florida, is Kailee Brown.
Kailee is a full-time nursing student at Dominican University, near San Francisco, California. She has had to cope with gastroparesis and malabsorption issues all of her life. As a child, Kailee’s parents managed to keep her healthy enough with diet modifications and supplements. In high school, however, she started to be sicker more frequently. “I was so sick every time I ate,” she remembers, “eventually I no longer wanted to eat at all.” Kailee ended up in the hospital. It was the first of many hospital stays, some of which lasted months.
“Growing up, my mother used to tell me that everything happens for a reason, but sometimes we do not know what that reason it. I have found, however, that over time, sometimes that reason presents itself,” Kailee says. “The time I did spend in the hospital changed my life….When it came time for me to enter college I decided I would rather be a nurse than an orthodontist.”
In 2006, after finishing all of the prerequisites at a junior college, Kailee applied to and was accepted at Dominican University. She struggled with nausea, exhaustion, and pain her first year, and underwent surgery for a PEG-J tube as soon as finals were over.
“It has been two years since I had my tube put in, and as I stood by the bedside of my patient…crushing her pills and starting her tube feeding, I knew I had finally found the meaning in why all of the ‘bad’ things that have happened to me medically have happened: they made me a better nurse. I know what it feels like to have to spend time laying in hospital beds and I know what it is like to be scared. When my patients tell me that they are scared, I can say with honesty that I know what they are going through, that I know how they feel.…I like being able to tell my patients that I have been there and that I overcame my obstacles to stand bedside instead of being in the bed.”
Kailee has maintained a 3.8 GPA and will apply to the honors society for nursing students next year. “Kailee is an extraordinary student who has earned my respect and admiration,” says one of her clinical instructors. “Kailee has so much to give to nursing….She will touch many lives.” Congratulations, Kailee!
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Feeding Tube Awareness Week
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Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week