Boy born with rare genetic condition lives every day to fullest as patient ambassador for Children's Hospital Colorado
A young Aurora boy born with a rare genetic condition has beat the odds again and again. But his future is uncertain.
Jackson is a patient ambassador for Children's Hospital Colorado. He and his mother are now advocating for research that could save his life.
More than 4,000 beads on strings hang in the Holbrook home. Each one represents an operation or milestone for 11-year-old Jackson.
"It's an amazing physical documentation of what he has endured," said Jackson's mother Traci Holbrook.
Jackson is too young to remember getting many of them. But his mother remembers each one, "This was his heart surgery, glass stars are days he spent in the ICU."
Holbrook was pregnant with Jackson when she learned he would be born with half a heart, a genetic condition known as CHARGE. According to the National Institutes of Health, "CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, genital abnormalities, and ear abnormalities."
"It just doesn't even seem physically possible to think that you can survive with half a heart," said Traci Holbrook. "Jackson is totally deaf in the left ear and has mild hearing loss in the right ear and then he wears glasses."
Children born with half heart have only a 50% chance of surviving to their first birthday. After two heart surgeries, Jackson did celebrate his first birthday and more over the next decade.
They have to get blood flow where the heart can't physically send it. So they have a series of 3 surgeries," said Traci Holbrook.
Jackson was born at Children's Hospital Colorado and has spent much of his life there receiving treatments. Unfortunately, he's not a candidate for the third surgery or a heart transplant. So as he grows, he struggles more.
"So for sure I don't know how long we have Jackson," said Traci Holbrook.
It's why the family doesn't take any day for granted.
"We're going to fight for quality because I can't guarantee you quantity. So he's going to go to school. He's going to go on vacation," said Traci Holbrook.
At school, Jackson said he has a lot of friends, "I also have a girlfriend. I really like her, she's kind of cute."
At home, he dotes on his cat and plays video games with his brother.
"He always wakes up happy, I've never seen him wake up anything but happy," said Jackson's brother Mason Holbrook.
And he always has a smile on his face.
"I'm always happy," said Jackson.
"He's just Jackson," said Traci Holbrook. "He's learned that this is life and I'm going to accept it and I'm going to live it for what it is and what I can do instead of focusing on what I can't do."
Tracy has become a resource for other families and an advocate for research, "I think any mom who has a sick kid learns to advocate for their kid. It's my job. My job is to advocate and ask questions."
Jackson is now a patient ambassador for Children's Hospital Colorado. His family says they are grateful to the hospital staff and want to support the lifesaving work the hospital does.
"I advocate for research... research is what is going to give Jackson's surgeons more options that don't currently exist," said Traci Holbrook.
She hopes the science will catch up to Jackson's medical needs in time, "We've got to think outside the box because the box wasn't built for my kid. There's no box for Jackson. So we've got to figure out what we can do because I'm not willing to accept anything else."
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