Amber's Story

Images Captured by Jennifer Boggett Photography

This beautiful Tiny Light will not burn bright for long, but her spirit and determination shine strong. Amber’s condition is deteriorating and she is now receiving palliative care, yet she continues to bravely meet each day with a smile on her face.

Amber has esophageal atresia, a condition where the esophagus does not develop properly. She also has left vocal chord paralysis, left optic nerve atrophy and cerebral dysgenesis. This means she aspirates on oral feeds or secretions, as well as g-tube feeds. Amber has frequent aspiration pneumonia that has caused severe bronchiectasis - destruction of the large airways. She is developmentally delayed and only functions at the level of a 1 or 2 year old.

The goal now is to give her the best quality of life possible, no matter how long. Amber is surrounded by a huge circle of loving family, including grandparents, stepparents, and siblings.  This strong 12-year old girl loves to listen to music and loves to dance, but her favourite activity is playing with her Elmo puppet. Her wish is to meet Elmo and at the end of November, that dream will come true. Thanks to fundraising efforts, Amber and her family are going to a Sesame Street Resort in Jamaica where Elmo will read her a bedtime story and tuck her in at night.

For mom Tara, the journey has not been easy, and her daughter’s worsening condition has meant many tears. But this Tiny Light has also brought so much inspiration, “She has taught me to live life to the fullest and be true to myself no matter what. She helped me see what is important in life and that is family – love and happiness.”

Written by Elaine Yong