- Meet Consumers/Patients
|2002 Oley Award and Scholarship Winners|
LifelineLetter Annual Award
Don is a 21-year HPN veteran and a long time, dedicated Oley volunteer. He has served as an Oley trustee and regional representative for more years than we can count. He founded the Canadian Parenteral and Enteral Nutrition Association which provides information and support to consumers throughout Canada via a newsletter and web site. He’s raised a wonderful son, Michael, and volunteered as a coach, ski patroller, scouting leader, curling manager, and more. On top of this, until he retired a few years ago, Don worked full-time for the Canadian government.
An avid traveler, Don has taken numerous trips on HPN across Canada and the United States, and has been to Europe several times. His actions and advice have inspired many consumers to travel beyond their immediate surroundings. No unforeseen obstacle will deter Don from getting away, as exemplified by his ingenious solution of gravity feeding — hanging his TPN bag from his ski tips — when his pump charger burned out on a trip to Germany.
Of course, his first trip suggestion has always been, “Go to an Oley conference.” Don has been to almost every Oley conference himself, and has recorded them, through his fabulous photography, for the benefit of Lifeline readers.
Don’s willingness to share his expertise in travel and the Canadian health system, as well as his experience with Crohn’s disease and positive attitude about HPN with anyone who asks, is what makes him so special. We are honored to share this award with him today.
Jim Cowan, Cleveland Heights, OH; Anna Cyr, Sabattus, ME; Todd Friedman, San Pedro, CA; Jane Golden, Watertown, CT; Brenda Hawn, Warren, OH; Barbara Klingler, Malabar, FL; Sonjia Layton, Buccan, Australia; Nathan Marlow, Muncie, IN; Jerry Mayer, Indianapolis, IN; Sheila Messina, San Jose, CA; Donna Miller, Highland, CA; Helen Miller, Baltimore, MD;
Lenore Heaphey Grassroots Education Award
Donna Miller, RN
Donna has opened her heart and her home to more than 100 medically fragile foster infants and small children during the past 21 years, a third of whom are maintained on homePEN. She is “Mom,” nurse and more for four-to-six children at a time, providing a caring and loving family and home.
It all began when Donna and her husband applied to be part of a pilot program that would allow foster homes to accept children with stomas. State regulations at that time required these children to be institutionalized (for years, if necessary) until their medical conditions were resolved to the point where they could return to their natural parents or be adopted. Instead of being hospitalized indefinitely, these children are now sent home to Donna (and others like her). When the children are ready to move on, Donna trains their parents on how to meet their remaining specialized nursing care needs. She has provided this special training to more than 50 parents in the past five years alone.
As if this weren’t enough, Donna went back to school and in 1989 obtained her certification as an RN, in order to provide more and better nursing services for the children in her home. She has been a Regional Coordinator for several years, spreading the word about Oley in her area and generously sharing her experiences with other parents over the phone and at conferences. She also helped to organize this year’s conference.
Donna has demonstrated exceptional courage, perseverance and commitment towards helping homePEN children regain their health and lead as normal a life as possible. We are in awe of her accomplishments and how gracefully she handles them. Keep up the good work, Donna!
Don Freeman, Nepean, Ontario, Canada; Donna Noble, Grovecity, OH; Eleanor Orkis, Schenectady, NY; Patty Woods, Hemet, CA
Mead Johnson Enteral Award
Erin Nicole Shore
Diagnosed with gastroesophageal reflux (GERD), dysmotility, allergies and an eating disorder, Erin has been fed by tube for five of her six years of life. Like others with these diagnoses, she has undergone multiple surgeries and hospitalizations, and is limited as to what she can and cannot eat. Despite these challenges, Erin is optimistic. She has a wonderful sense of self and self esteem. She also has a great sense of her body image, and proudly wears a two-piece swim suit to the beach or pool.
At school she is known by her teachers as an outgoing friend to her peers. She enjoys helping her fellow classmates and is compassionate to children with or without disabilities, looking only to celebrate the unique person they really are. To be sure her transition to school went smoothly, Erin decided to educate her peers at the beginning of the year about her condition and tube. By letting them know she is comfortable talking about her medical issues and willing to answer their questions, they became comfortable with her and her situation.
The one thing Erin is not comfortable with, is getting special treatment because of her condition. When her classmates have tried to give her special status, like first in line, Erin graciously refuses — reminding them she is perfectly capable of waiting her turn. This attitude is echoed by the brave, smiling face she assumes at school and in the hospital, despite her pain. She advocates for herself with hospital clinicians and has taught them and her loved ones how to be strong.
Erin is ready and willing to try anything. She enjoys skiing and horse back riding. She loves a new challenge and sets her sights high for the future. We salute her shining, exemplary attitude!
Ashlyn Rowley, Ontario, CA
Oley Foundation Young Adult of the Year
Luke is an exceptional 14-year-old who lost all but 10 inches of his small bowel when he was in 3rd grade. Eager to educate his peers, Luke went before his class when he returned to school and explained his surgery, what short bowel syndrome is, and all about homePEN. Like other outgoing and active teenagers, Luke participates in school, scouts and sports. What sets him apart, is his ability to handle his struggles with grace, and to continually look on the bright side.
After years of interrupted sleep, Luke invented a device to prevent his feeding line from occluding during the night. He entered this device in a prestigious science fair and won second place. He is working on getting the device patented and produced. The news of his award has also allowed Luke to educate people about SBS and homePEN, via the press coverage it has generated.
Luke puts his energy into living first, and then fits in his medical needs. This philosophy has enabled him to live fully and to give to others. Luke works with parents who have children on homePEN who are too young to speak for themselves. He explains what it is like to be on therapy, answers questions for them, and most of all gives them hope for their children’s future. He also volunteers in a variety of capacities for Columbus Children’s Hospital, including educating new staff members on what it’s like to be a patient there. We are proud to present him with the Young Adult of the Year Award.
Paul Butzin, Graytown, OH; Maisy Cyr, Sabarrus, ME; Malory Cyr, Sabattus, ME; Rommel Degracia, Lynnwood, WA; Roy George, Syracuse, NY; Owen Huss, Longmont, CO; Katherine Jones, Portland, OR; Lakisha Judge, Kelso, WA; Nin
3/2/2017Riding the Tube
2/9/2017Mums team up for "tubie" support