City, State: Bend, OR
Club: Mountain View High School Sparrow Club Service Hours:
Date Adopted: 2/21/2014
Taylor is a beautiful little girl who enjoys singing, dancing and playing with her younger sisters. To look at her you would never know that she is a very sick little girl. She was born with a condition call Gastroschisis. Her intestines were on the outside of her body and her umbilical cord had wrapped around them. 90% of her bowels were destroyed and had to be removed.
Taylor was sent to Seattle Children’s Hospital where she spent the first 2 months of her life. She was placed on the list to receive a small bowel transplant and allowed to return home. Unfortunately, small bowel transplants are among the most difficult to receive as that is the first part of a donors body to break down.
So, Taylor continues to wait. In the meantime, she has a broviac tube through which she receives daily TPN (total parenteral nutrition) and lipids to provide her with the nutrition she needs to survive. She eats nothing by mouth. She gets infections often causing her tube to have to be pulled and placed somewhere else. Doctors are concerned that she will run out of access points before she finally receives her transplant. They also do not know how long someone can live on just TPN and lipids alone.
There have been 4 opportunities for Taylor to receive a transplant in the past 5 years but none have worked out. Right now, she has to travel to Seattle every three months for her doctor visits and patiently wait for that next phone call, hoping for a transplant soon.
Sparrow Cash raised for Taylor will help the family with ongoing medical and travel expenses.