Living More Fully with Tube and IV Feeding
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“Through this invaluable organization we learned what we
needed most—how to improve Sean’s care and improve his
outcome. Oley gave us support. Finally, here were
families and experts who understood the challenges we faced. Oley gave us
expertise—unprecedented access to leading clinicians and research that
directly affected our son. Oley gave us knowledge.
With Oley’s help we learned concrete ways to
drastically improve Sean’s health. Over and over the experts available — Linda & Paul
May "When my son Matthew suffered a midgut volvulus at the age of five, the lives of my entire family changed in an instant. We were frightened in our darkest hour, and the Oley Foundation reached out to help us." —Edithe Swensen "Entering into this whole new world of homePEN would have been totally overwhelming had it not been for your newsletters, correspondence and the family network." —Robert &
Susan Koprucki "Discharged from the hospital at 5 weeks old, Julie was accompanied by an IV catheter, surgically implanted into chest, and a stoma in her stomach with an exiting G-tube that emptied into a colostomy bag. She infused TPN for 20 hours a day just to stay alive. In spite of this new lifestyle, I consider us to be the lucky ones... a family fortunate enough to have been introduced to the Oley Foundation, the life preserver for people who require enteral and parenteral nutrition. I can’t even imagine repeating Julie’s first year without them." —Heidi &
John Andolina "Thank you so much for the wonderful conference. We made friends and got an education at the same time! It is good to know that we are not alone in this life we now live." — Dava Huss "HPEN feeds my body; The Oley
Foundation feeds my head, heart & soul !!" — Robin Lang “For the past number of years I have been receiving your LifelineLetter. When my mother was told that she would have to permanently feed through a Hickman line, she felt she could never cope. Here in Ireland I found it very hard to get any information, and it was by going on the web I found out about your organization. It was like a lifeline for my family. Reading other peoples stories and experiences, and seeing how well other people coped, gave my mother strength; she didn’t feel like she was the only one having to live her life this way. Thank you for your newsletter. It helped a family greatly in their time of need.” —
Angela Doyle “When the surgeon first explained that if we proceeded with the needed surgeries Jeffrey would have short bowel syndrome, we started doing some research. At first all the information we found was dire. Knowing Jeffrey's love and zest for life we knew he would not want to live that way. Then our daughter found the Oley Foundation, which presented a completely different picture about life with a short gut. The girls began immediately emailing consumers. The responses were overwhelming. One consumer called my daughter within minutes of receiving the email and spoke with her for over one hour. Others emailed quickly offering any help, support, counsel they could provide. Once we knew the true facts, our decision to proceed with the surgeries was made. Today, only 4.5 months after his fourth and final surgery Jeffrey has returned to work and is leading a "normal/new normal" life. Oley consumers continue to provide help, support, and counsel. The networking and information garnered at the Regional Conference in Chicago was invaluable.”
—Susan
Schesnol “I read about Dr. Iyer in your newsletter….He was talking about patients on TPN and liver failure. I felt like Dr. Iyer was talking about my son Matt. I wrote to him describing my son and his condition of short bowel syndrome. He called me and said he could help Matt. Now, we are on our way to New York City, where Dr. Iyer will perform the Bianchi procedure on Matt to lengthen his shorten intestines. We feel like this is a chance for Matt to have a more normal life and not have to be on TPN for life. Thank you for your organization and newsletter, you made it possible for us to connect with Dr. Iyer and we are very grateful.”
—Colette A. Bainbridge In response to an
invitation to an Oley Foundation event:
— Lori Wood |