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When it comes to her baby, a mom just knows.

During my pregnancy, our baby didn’t move. When Leah was born in 2012 I looked into her beautiful face, and my intuition told me she was going to be special. She is!

Aaron and I soon learned from a geneticist at CHEO that Leah was missing part of her 18th chromosome, called Distal 18q deletion. This rare, unpreventable syndrome causes global developmental delays (intellectual, speech, and motor skills), small stature, low muscle tone, poor reflexes, tremors and hearing loss. Our path was unforeseen, but our love for Leah is as strong as we expected.

Our family is fully engaged with both CHEO and the Ottawa Children’s Treatment Centre (OCTC). We’ve consulted 14 services and specialists in just five years! A diagnosis like Leah’s is not something a family can manage alone. We rely on this community for help.

Leah’s care has been an emotional roller coaster, thankfully CHEO has been there every step of the way. Along with speech delays, cardiac issues and problems swallowing, Leah’s hearing impairment is likely permanent. A bone vibrating hearing aid has helped her development, and therapies available at OCTC along with admission to the pre-school, have been an amazing gift.

Leah is in Kindergarten at the OCTC School. Her days include occupational therapy, speech therapy and physiotherapy. Therapy along with learning has changed a quiet, insecure child into a vivacious and curious little girl. She amazed us by walking independently within her fi rst month! This accomplishment transformed our perspective on Leah’s potential, and her future!

The amalgamation between CHEO and OCTC is helping families navigate the system by coordinating care while sharing one patient chart! Your donations to the CHEO Foundation will purchase equipment and fund programs at CHEO and
OCTC. Our family has seen fi rst-hand the power of your donations at work. 

Life with Leah is unpredictable, but we don’t feel alone thanks to CHEO-OCTC. Their commitment is to the child, and the whole family. Leah’s horizons are broadening, her outgoing personality is shining through; she touches the hearts of everyone she meets.
Leah is our bright light – we laugh every day. She loves dancing, the colour purple, bubbles, pretty dresses and anything that sparkles. She is a gift to us and we are very proud of her.

Your support is so appreciated. Please believe that it makes an enormous difference for children like Leah.


Nicole Stanger

P.S. Please consider a monthly donation. Your gift will help CHEO patients each and every day!

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