Uncover the magic.
Reveal the story.

Carlee sees more of the inside of the hospital than she’d like. The bright and talented six-year-old who loves everything to do with music has multiple conditions that make being a “normal” kid difficult. She has both Tetralogy of Fallot – a heart condition – and Diamond Blackfan Anemia – a rare and incurable disease. Her complex medical life results in countless appointments across many hospital departments every month.

Join Carlee's journey and follow along as she and her family find much-need joy through her wish.

Uncover the magic.
Reveal the story.

Carlee sees more of the inside of the hospital than she’d like. The bright and talented six-year-old who loves everything to do with music has multiple conditions that make being a “normal” kid difficult. She has both Tetralogy of Fallot – a heart condition – and Diamond Blackfan Anemia – a rare and incurable disease. Her complex medical life results in countless appointments across many hospital departments every month.

Join Carlee's journey and follow along as she and her family find much-need joy through her wish.
Carlee and her Family
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Carlee’s Story

Part I
Good things come in small packages
Charles and his wife Lian were over the moon in 2012 when they found out they were pregnant with their second child. The typical doctor’s appointments and tests ensued, and it was in the second month that they found out something wasn’t right. Doctors determined the tiny fetus had an abnormal heart condition and an immediate rush of uncertainty and fear overshadowed their growing excitement. Cautiously moving forward with their pregnancy, the couple maintained faith that their little baby girl would pull through.

Carlee, a feisty but tiny life, was born premature at 36 weeks – “she was so small; 3 kilograms and 45 centimeters; she fits between the tips of my fingers and my elbow,” Charles says. It was then that her parents discovered how serious her condition was. White as paper and extremely anemic, Carlee spent her first nine weeks in the NICU surrounded by tubes, oxygen tanks, blood transfusions and beeping machines. She underwent an emergency heart stent at a weight of only 4.3kg. Her primary diagnosis was Diamond Blackfan Anemia – a condition that affects only 10 children out of a million – and she was among only three children in B.C. with the illness at the time. Her heart problem – Tetralogy of Fallot - doctors discovered, was a by-product of the anemia.

Carlee as infant At two months old, Carlee and her parents were sent home and started an unfamiliar life they were wholly unprepared for. There are no books on how to raise a sick infant, connected to oxygen tanks and gastrointestinal tubes, Charles laments now. He and Maria practised putting the NG tube on each other so they could safely apply it to Carlee. Nurses constantly came and went from their home for several days until the help ended and they were left on their own.

As parents do, they took it one day at a time. The first few years were rough. Carlee had a successful open heart surgery on September 11, 2014, but she was in and out of the hospital constantly due to a weakened immune system. Any bug that came her way was a threat, especially a rare superbug virus that almost ended everything. Charles remembers one of the darkest days at the hospital when doctors called a “Code Blue” and they were rushed out of the room as doctors converged on one-year-old Carlee as she aspirated. “It was really scary. I think that was one of the lowest points. We really almost lost her,” he says. The aspiration resulted in a chronic lung disease.

Carlee as infant At the height of her treatments, Carlee was managed by 11 different departments at BC Children’s Hospital. She has bad eyes and holes in her ears, resulting in hearing and vision loss, and requires speech therapy. On average, she has five to eight medical follow-ups each month. She is also tiny for her age; at age seven she is about the size of a four or five year old. She will require more surgeries as her heart grows, and for now an experimental treatment of steroids is keeping her stable. Doctors don’t know when, but the treatment isn’t expected to work forever. Despite all this, Carlee is an amazingly happy child who shines bright in all aspects of her life. She loves everything to do with music and Disney, and has recently started up guitar lessons. Carlee has a strength that many kids don’t. Her courage gives everyone around her inspiration and hope and her dad says she is “the gift that keeps on giving.” She is much healthier now than before and is more able to enjoy life as a child, always with a smile on her face.


Part II
Stay tuned for the rest of Carlee's story, coming soon.If you're registered as a VIP, you'll be alerted when Part II is revealed. You'll also get early-bird access to our exclusive silent auction, invitation to our VIP Reception on gala night, and be entered to win two tickets to our 2021 gala, at no extra charge.*

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