At 8 years old, Ally Winter has overcome many obstacles.
Four years ago, she was engaged in a life threatening battle when tumors twisted most of her small intestine, killing it, said Pam Winter, her mother. Ally Winter was diagnosed with short bowel syndrome because she has a very limited amount of small intestine, Pam Winter said. This renders her incapable of absorbing nutrients from food, and forces her to rely on intravenous fluid for nutrition, Pam Winter said.
This week, Aug. 5-11, is Home Parenteral Nutrition Awareness Week.
“Ally wants others to know that there is life and hope while living on intravenous feedings,” Pam Winter said.
Although Ally Winter requires IV nutrition, or parenteral nutrition, she has kept a positive attitude, Pam Winter said.
“Despite her chronic illness, Ally is independent and full of life!” Pam Winter said.
Her parents were told she would never be able to eat again, but she does eat, although she doesn’t absorb much, and she enjoys cooking dinner for her family, Pam Winter said. Ally Winter also is able to live an active life, enjoying camping, fishing, swimming and horseback riding.
“She does have times in the hospital,” Pam Winter said. “But most of the times, we’re able to go and do (what other people do.)”
Ally Winter participates in most of the activities she loves while being hooked up to her IV nutrition, carrying it in a backpack, Pam Winter said.
The Winter family has found much support from the Oley Foundation. The Albany-based organization offers various programs free of charge to the families of patients who require feeding tubes and intravenous nutrition, said Roslyn Dahl, director of communications and development for the Oley Foundation.
“Our mission is to enrich the lives of patients who are dependent on intravenous or tube feeding,” Dahl said. “There’s more people dependent on tube feeding than on intravenous feeding. Both are equally serious.”
There are currently 12,000 members, including patients and professionals.
“It’s a great way to connect people with the most up to date information and to find support from peers,” Dahl said. “Because there’s a low number of patients on these therapies long-term, the chances of you finding another patient on your own are low.”
But patients and their family members can connect through the Oley Foundation.
Connecting with the Oley Foundation will improve patients’ quality of life, reduce their chances of infection rate and reduce their levels of depression, Dahl said.
Patients and families can join the network free of charge at http://www.oley.org or by calling 800-776-6539.
The Oley Foundation has a webpage where patients and families can access information. There is also a toll free number, 800-776-6539, that patients and family members can call in order to ask Oley Foundation staff members questions. If the staff members aren’t able to provide answers, they can direct patients and family members to a number of places within a network of clinics, insurance companies and patients for answers.
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The Oley Foundation hosts a conference every year where doctors, dieticians, parents and patients are able to network.
“It’s typically held in June,” Dahl said.
It was held in Redondo Beach, Calif. this year.
Ally Winter’s family received helpful advice while attending this conference this year.
“We’ve had a big success with Ally,” Pam Winter said.