- Meet Consumers/Patients
|2013 Oley Award and Scholarship Winners|
2013 Oley Awards and Scholarship Winners
LifelineLetter Award, HPN
In honor of Nutrishare, Inc., Oley Gold Medallion Partner
Bethany & Cindy Sabbag
This year the LifelineLetter Award, HPN, went to Bethany and Cindy Sabbag, a mother-daughter team who work together to manage Bethany’s chronic pseudo obstruction and mitochondrial disease. Bethany has had challenges with oral feeding since she was an infant. She had gastrostomy and jejunostomy tubes (G- and J-tubes) placed before she was two years old, and had to start on parenteral nutrition (HPN) when she was ten because she could no longer tolerate enteral nutrition.
Despite complex medical needs and chronic fatigue, Bethany has strived to get the most out of life. She is a talented artist and an accomplished graphic designer, and she loves acting. She gave a spirited rendition of a Shel Silverstein poem at the conference. Katherine Karbel, a Nutrition Support Dietitian who knows Cindy and Bethany well, writes, “Bethany is an intelligent and articulate woman who has generously shared her talents and positive attitude with others. She has given talks about overcoming the challenges associated with mitochondrial disease and demonstrated an incredible attitude and spirit which inspires anyone listening to consider what is possible in their lives.”
Cindy and Bethany are regular attendees at MitoAction’s annual Derby Day Celebration, where they enjoy modeling hats they’ve created for the event, and MitoAction’s annual Family Fun Walk, walking with Bethany’s Unbeatable Spirit team. Recently, at a family weekend at Camp Hole in the Wall in Connecticut, Bethany tackled the climbing wall. A dedicated team worked with Bethany to help her get safely to the top (IV and all), where a zip line awaited her. Undaunted, Bethany let the group rig her up (with her backpack safely secured) to “zip” back to the ground.
Katherine writes, “Cindy shows ongoing commitment to Bethany’s care and a desire to optimize her daughter’s quality of life. She encourages Bethany to believe in herself and her abilities, and with the help of home nursing staff, has tirelessly attended to Bethany’s complex medical care. One of her great triumphs is maintaining Bethany’s current central line for over eight years without a single infection, which is an incredible feat.”
In one of the talks Bethany has presented on mitochondrial disease and her nutrition therapy, Bethany says, “Thanks to my mom, my enthusiasm is boundless, even if my energy is not.” (The talk, “Young Adult with Mito Learns to Live,” is posted on You Tube.)
LifelineLetter Award, HEN
Sponsored by Abbott Nutrition, Oley Benefactor Level Partner
“Timothy Eckard—like so many other men—goes to work, spends time with his kids, and tries to cultivate an atmosphere of education, physical activity, and fun,” writes Beth Bailey, a nurse at Pediatric Connection. “A stark difference between Timothy and so many others,” she continues, “is that on top of these normal roles, he dedicates his time and just about all of his thoughts to medical care, education, and advocacy, as both of his sons are disabled.”
Timothy is dad to Zack and Tyler. At eighteen months of age, Tyler was diagnosed with failure to thrive due to kyphosis, which was causing his neck to grow forward and cutting off his airway. At the same time, Timothy was granted sole custody of his two sons. Tyler had surgery in 2003 to correct the kyphosis, and later underwent another surgery to tackle the problem of projectile vomiting. Tyler’s doctors told Timothy that Tyler was unlikely to survive beyond five years old. “With personal strength and perseverance, Timothy set out to prove the doctor wrong—and he has!” Beth says. Tyler has been on home enteral nutrition (HEN) for over ten years, and today he is a joyful, flourishing twelve year old.
“Timothy’s immense courage and determination brought him and his boys to where they are today,” Beth writes. “Timothy relishes the fact that he provides for Zack and Tyler without solely relying on governmental help. To that extent, he works two jobs—the second job on the night shift gave him the funds needed to buy a truck for hauling wood to heat their home—and sees to it that his boys get every ounce of care, attention, and love they need.” Timothy also advocates for his boys’ needs—educational and physical—at school.
“This father’s loving attention is evident in everything he does,” Beth adds. “He is exceptionally generous to others, even giving vegetables out of his garden to those who need it.”
Child of the Year Award
In honor of ThriveRx, Oley Gold Medallion Partner
Andrew’s mom says Andrew was never sick—until December 2009, when he lost most of his small intestine due to a volvulus. “His life changed dramatically over night,” she explains. “He spent two years on HPN [home parenteral nutrition], until his central line was removed because of another line infection. Now he is on HEN [home enteral nutrition, or tube feeding] for eighteen hours a day, struggling to maintain his weight and hydration. Most likely, he will remain on HEN for the rest of his long life, and will probably be periodically put back on HPN also.”
Andrew was just beginning his freshman year of high school in 2009. In June 2013, he graduated from high school; and in the fall of 2013, he will begin his freshman year at college. “Andrew not only had to learn how to adjust to high school his freshman year, he had to learn how to do it with a new chronic medical condition,” his mother, Robin, continues. “He has missed close to a year of school because of illness, but he has managed to make up all missed work during the last four years. That’s an accomplishment.”
Andrew’s accomplishments extend well beyond school. In February 2011, he testified in front of his state legislators for S.B. 312, “An Act Eliminating the Age Cap for Health Insurance Coverage for Specialized Formula.” He was later interviewed on a local news program. He is also compassionate; he has participated in several fundraising/awareness walks for ill friends (cancer and cystic fibrosis). Robin says, “When his doctors get a patient or a parent who is concerned about their new life, Andrew is introduced to show them it is not a burden.”
Boy Scouts is a big part of Andrew’s life. He attended Scout camp as a day camper soon after the volvulus, and received the “Honor Camper” award. He helped teach younger campers Scout skills during his free time, which resulted in his being offered a job at the camp. “Somehow,” Robin says, “he ended up working in the dining hall, helping with food he couldn’t eat. He was bullied the entire summer by an adult. From that experience, for an Eagle Scout project, he made a bullying awareness video and a resource book for the town library. His video is now used in the curriculum at Region 10 Schools.” For the past several years, Andrew has been a Den Chief, which allows him to mentor Cub Scouts. He became an Eagle Scout on March 6, 2013.
Lately, Andrew has taken up “the hobby of illusions.” Robin says, “He is in the process of making an act to bring back to the children’s hospital. He is hoping to visit with every patient he can because he remembers how lonely and bored he was while hospitalized. He seems to spread awareness and wants to give back everywhere he goes.”
Celebration of Life Award
In honor of Coram Specialty Infusion Services, Oley Gold Medallion Partner
It seems neither Crohn’s nor HPN has slowed him down, though. Dave has been involved in advertising for twenty-nine years (ten as an illustrator and the past nineteen as a digital print sales representative), and has continued to work full-time. He also enjoys art, traveling, antiquing, zip-lining, tennis, and biking with his family. Most recently, Dave, his wife, Stacey, and his daughter, Bailey, have taken up running. Since 2009, they have trained for and run two half-marathons, as well as several shorter races, to raise awareness of Crohn’s disease and raise funds for the Crohn’s & Colitis Foundation (CCFA). “I refuse to let my illness, or medical situation define me,” he says.
Dave is active in his local CCFA group, and reaches out to others on nutrition support. Michelle Guinigundo, who also relies on HPN, says Dave “has always been willing to talk and counsel me on how to adjust to life on HPN. When I was at my lowest point, recovering from surgery and trying to understand life on HPN, Dave would talk me through all my fears and concerns, letting me know that I wasn’t alone in this new life.”
Donna Kloth, a home nutrition nurse who has known Dave for fifteen years, notes, “Dave has impressed me with his desire to learn about his disease and how to better manage it. He has sought out health care providers who understand his need to be independent and on top of any problem early on. He is the epitome of being a strong advocate and sets his expectations high for himself and those who care for him. He is fair, honest, and always willing to listen to suggestions. His GI doctor calls him his ‘poster boy’ for living a good life with adversity.”
Nan Couts Award for the Ultimate Volunteer
Coordinated by Judy Peterson, RN, MS
Marion Winkler, PhD, RD, LDN, CNSC, FASPEN
A glance at Dr. Winkler’s research topics, volunteer and board activities, and career development show that she is clearly devoted to the home nutrition support community. She has spent much time and energy on research involving home parenteral nutrition (HPN) and quality of life; the meaning of food and how not being able to eat affects home nutrition support consumers; and other similar topics. She has written and spoken extensively on these subjects, including several articles for the Oley Foundation newsletter. Recently, she has been instrumental in helping Oley develop an extensive glossary of nutrition support–related terms.
Dr. Winkler has had direct contact with home parenteral and enteral nutrition (HPEN) consumers as a dietitian at Rhode Island Hospital for over twenty-five years. A.S.P.E.N.’s Senior Director of Clinical Practice, Advocacy, and Research Affairs, Peggi Guenter, PhD, RN, writes, “In her clinical practice, Marion always puts the patients first. She works long hours in her clinical setting, and teaches new physicians, nurses, dietitians and other trainees in her academic position about HPEN consumers. She always teaches them that the patient comes first.”
For the past five years, she has been very involved with the development of an A.S.P.E.N. Home Patient Registry. “This project, called Sustain, is a home patient database which will generate data on patient outcomes including functional status, quality of life, morbidity and PN complications,” explains Dr. Guenter. “This registry also includes questions about support programs including the Oley Foundation. Marion was instrumental in making sure that quality of life and functional status information is collected in Sustain. She also has brought us the idea that we should have a direct patient entry program as a component of Sustain and we are considering that.” A database like Sustain is important to HPN consumers; it can help establish best practices, for example, and identify patterns among patients or programs.
Kyle R. Noble Scholarship
Coordinated by Richard and Donna Noble
Kyle Noble, who passed away in 2006, is remembered widely with affection. His family established the Kyle R. Noble Scholarship to recognize others who exhibit his enthusiasm for life. This year, the Scholarship Committee selected Emily Koprucki for this $2000 scholarship.
Emily was born with megacystis-microcolon-intestinal hypoperistalsis syndrome, a very rare condition. As a newborn, she received her first G-tube (for tube feeding), as well as a central line for home parenteral nutrition (HPN or IV feeding). Looking back, Emily—now a high school graduate—says, “Despite the extra ‘appliances,’ I never felt that my life was hindered in any way. I just ate differently, that’s all.”
For a while, Emily was able to consume enough calories and nutrients through tube feeding and by mouth that she could be weaned off HPN. But in seventh grade, her health began to diminish. She was put back on HPN, and was unable to return to school for months due to low energy reserves, gastric pain, and severe weight loss. Thanks to Emily’s personal determination, she completed seventh grade with the help of a tutor.
In fighting to be able to return to school for eighth grade, Emily learned a great deal about self-advocacy. “Returning to school for eighth grade was a battle,” Emily writes, “due to the lack of understanding of those on the school board and my overall health. At that point, I required continual infusions of HPN throughout the day. If I were to continue with my class schedule, I would have to infuse while in the physical school setting. The head of nursing for the school district was quite skeptical, and thought of us as overly ambitious in wanting to achieve this goal. She was not convinced this would be doable…After continuous battles for educational equality, we finally convinced her to hold a meeting with her staff. All the nurses for the district attended…I shared with them my daily routines of medicines, infusions, and procedures. I casually continued the discussion while simultaneously spiking a one liter bag of half normal saline with ease and effortlessly programming a ‘complicated’ pump as if it were a Game Boy.”
After this, Emily was allowed to attend school while infusing HPN. Just as important, Emily says, “This was the first time I really experienced what a difference I could make by advocating for myself.”
Emily has been an active member of the Oley community for many years. One of her high school teachers notes that Emily talks to him about some of the friends she has met through Oley activities. “Whenever someone she has come into contact with is having a difficult time, it weighs heavily on her; she is a tremendously caring person.”
Emily is also involved with an animal rescue program and has fostered several rabbits while they awaited adoption. She is an avid horseback rider. “It is the most amazing high for me,” she writes, “and although it makes certain people concerned, it is an activity that I can pursue while infusing hydration fluids.”
Complicated surgery in tenth grade caused Emily to miss much of another year of school, but this spring Emily graduated with her class. In the fall she will begin her freshman year at Erie County Community College in Williamsville, New York.
2013 Nutrishare HomePN Research Prize Winners