Keira W.

Condition: Costello Syndrome
City, State: Redmond, OR
Club: Elton Gregory Middle School Tom McCall Elementary School Sparrow Club Service Hours:
Date Adopted: 1/06/2014

Keira's Story:
Keira had no known issues before she was born. So when she looked a little different at birth, her parents began to wonder if something might be wrong. She also had issues with breathing, a high heart rate and her blood sugar wouldn’t stay up. She was taken to the NICU where she stayed for two and a half weeks. Kiera could not really figure out how to eat, so at four and half weeks, she had a feeding tube placed to help her get the nutrition she needed.

Eventually doctors discovered a heart murmur and Keira was diagnosed with two different heart defects. Genetics tests were done and doctors said that there were a few issues but nothing that pointed to anything specific. After some research, Kiera’s parents asked doctors to test her for Costello Syndrome. She was officially diagnosed at 6 months old. Costello Syndrome is a mutation that affects all body systems. It is what was causing the feeding issues and the heart defects. Only 200-300 children around the world have ever been diagnosed with this condition so there is not much known and little support.

For the first year of Keira’s life, she was up 20 times a night due to complex sleep apnea. Finally at three and half, she was put on sleep meds to help her get through the nights. Now she awakens about 3 times per night. She has orthopedic issues and low growth hormone causing her to be small for her age. She had a bladder mass removed in January and has been diagnosed with Cerebral Palsy as well.

Keira was recently taken off her feeding tube and is learning to eat more on her own. She has issues with blood sugar and is at high risk for developing cancer. She must have frequent MRI’s to keep tabs on things. Her teeth came in with very little enamel and she has had to have them all capped. She also suffers from vision problems.

Keira is a beautiful little girl with a bright smile and a sweet voice. She loves to read books, paint, play outside and play with her stuffed animals. She especially enjoys TV and movies. Cars characters are her favorite.

Sparrow cash raised for Keira will be used to pay for ongoing medical expenses, dental care and a therapy swing to help with her movement.


The May Family
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