Condition: Chromosome 15 deletion; Kidney transplant
City, State: Medford, OR
Club: The Valley School of Southern Oregon Sparrow Club Service Hours: 287
Date Adopted: 2/22/2019
Ellie's Story:On November 15, 2016, a precious little girl named Ellie came into this world weighing just under 5 pounds. To say Ellie is a walking, breathing, living miracle is quite the understatement.
During the pregnancy, Ellie’s parents were told that she had several severe health problems due to a chromosome 15 deletion, and that once she was born there would be no chance of surviving. Doctors advised them to prepare for the worst when delivery day came. The news was extremely painful and scary to hear, but Ellie’s mother and father chose to hold on to hope for their baby girl.
After Ellie was born she and her parents were sent home with hospice care and told to enjoy as much time as they could have with their new baby.
Because of the chromosome 15 deletion, Ellie has many factors that complicate her overall health. Chromosome 15 contains 600 to 700 genes that are responsible for providing instructions for making proteins. These proteins perform a variety of different roles in the body. The main area that has been affected are Ellie’s kidneys. While in the womb, her kidneys never fully developed. Once she was born, her kidneys were only functioning at 6%, but because she was so fragile and also had heart complications, doctors would not risk surgery.
Every day was a gift at that point, and the goal was to take it one day at a time. So that is what Ellie and her family did, to everyone’s surprise Ellie improved a little each day.
That first year for Ellie was a roller-coaster of improvements and set-backs. Ellie underwent many medical tests, various medications, had a g-tube surgery, and spent some extended time at Doernbecher Children’s Hospital. Despite all this, Ellie was able to grow and put enough weight on to make her a candidate for surgery.
Ellie is now scheduled, along with her mother, to step into the monitoring stage of a kidney transplant. If all goes as planned, Ellie’s mother will be giving her one of her kidneys by the summer of 2019.
Ellie is an incredible testimony to what determination looks like. “She does it her way, in her time,” according to her parents. This sweet and joyous little girl is a great example to never give-up hope.
Ellie will be adopted as a Sparrow to The Valley School of Southern Oregon. Students there will work hard to raise money for Ellie through sponsored community service and fundraising projects.
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