When she was 6 years old, Charity begged her parents to let her take karate lessons. She wanted to perform exciting stunts she saw in superhero movies. But one major obstacle was in Charity's way. She has been connected to an intravenous nutrition bag, also known as TPN, most of her life because of a complex gastrointestinal issue.
It took a while for Charity’s parents, Janet and Kirk, to make Charity's martial arts dream a reality. But Charity remained persistent, so Janet found a dojo and a sensei willing to work with her daughter, despite her health issues.
Today, Charity continues to break through the barriers of her diagnosis and dedicates her time and energy to the sport she loves and thrives in.
A complex diagnosis
At 3 years old, Charity was diagnosed with cerebral cavernous malformations (CCMs) and probable mitochondrial disease. As a result, the mitochondria in her body cannot efficiently turn sugar and oxygen into energy, so the cells do not work correctly. In other words, Charity cannot digest food normally.
Janet says Charity's gastrointestinal tract is the most affected. She has undergone numerous surgeries and depends on a G-tube and TPN because of a disaccharide deficiency.
“Her life could change in an instant if she has a bleed,” says Janet. “Charity's gastrointestinal system is quite complicated, and she will always need careful monitoring and heavy intervention to keep her functioning.”
In the last two years, Charity finally started eating real food for the first time, with the goal of weaning off TPN. She says she first tried veggie sticks but has since expanded her palate.
“It felt really cool,” she says. “They were more of a snack, but I felt really happy that I could actually have something for once. I think it's kind of fun to, like, explore different kinds of food that my mom makes.”
A struggle to find answers
Janet and Kirk adopted Charity when she was just 4 days old. They noticed she wasn’t eating or growing properly after a few months, but thought they were dealing with food allergies.
“As a newborn, she had reflux, vomiting—things like that,” says Janet. “She would start screaming a different kind of cry—like she was almost angry. And she'd get sweaty and shaky.”
Getting a proper diagnosis for Charity was a frustrating experience for Janet and Kirk, mainly because the couple had no background on the biological family's history. They had to do genetic testing and keep Charity on special dietary restrictions. She also became TPN-dependent before the age of 4. Janet says she questioned everything during that time, including her capability as a mother. Charity suffered from seizures, neurological and gastrointestinal issues, and the family spent a lot of time in an emergency room or at a hospital seeking answers.
Charity’s health improved when she was referred to Phoenix Children's at 3.
A welcome change in Charity's care
“Phoenix Children's has been a huge blessing,” says Janet. “When we first started down the medical path, we didn't really fully understand everything that was going on with Charity.”
She adds that, from the first hospitalization, she realized how much Phoenix Children's tries to make kids comfortable.
“She was barely 2 years old the first time we went there,” Janet continues. “We were blown away by how compassionate and helpful they were.”
She says Phoenix Children's staff—the nurses, doctors and Child Life team—have helped Charity reach significant milestones.
“She doesn't need certain things now to get through medical procedures that were needed then, but they still are always there cheering her on and helping her in whatever way possible,” Janet says. “As she's getting older, I'm seeing a shift with the doctors starting to talk to her more about what's going on and her being able to relate to them.”
For Janet and Kirk, Charity's comfort in her favorite doctors' care is so vital to the family. She has been through a lot in her life, including brain surgery, mini strokes and seizures. But there's hope.
“It is a big difference to be where we're at now than where we were even just a few years ago,” Janet says.
A look to the future
For the longest time, Janet and Kirk wondered if Charity would have a future because of her health. But through her resilience, and with the help of Phoenix Children's, Janet says they now look at Charity’s potential future through a different lens. They no longer wonder if she will have a future. Now, they imagine what her future holds for her.
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