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Sophia's Journey

“Our lives started out in a 2-door hatchback car, but grew to include a bus,” says Kristy, single-parent mom of CC4C Child Sophia (Age 11).

As a baby, CC4C Child Sophia was diagnosed with a rare chromosome duplication 1Q21.1, which has no previous medical research or knowledge. The first of her three cranial surgeries took place in 2012 (age 2 ½ at the time). Her surgeons shaved her head, made an incision, and placed metal expanders inside her head to expand her skull. She also had the first of four Chiari decompressions to relieve pressure at the base of her brain.

On the morning of Sophia’s 8-hour long surgery, Kristy and Sophia walked into the hospital alone. They were used to doing things on their own (along with a team of 24 doctors monitoring Sophia’s care) - hospital visits and surgeries were no

exception. Sophia was prepped and ready for surgery, so Kristy returned to the hospital lobby – to find half of her church community sitting in the lobby to pray and support her through the surgery.

Several years later, Kristy was selected to participate in a self-compassion class through Dell Children’s Hospital. Many of the families in this class were part of CC4C. Kristy said, “I was in a room full of people who had no idea the details of what I’d been through, but somehow they all understood what I was facing.” Just 2 months after this class concluded, Sophia was in the hospital yet again. This time she had another new network of support on her bus – families Kristy had met by attending the self-compassion program.

Sophia joined CC4C as a Champion Child in the Fall of 2018, adding all our families, volunteers, donors and supporters to her bus on the road to healing. Kristy joined CC4C’s TRIBE 4 Moms program, which offers support and connection for the moms of our medically fragile children. “I was so used to doing things alone that sharing things with other people was new and refreshing. TRIBE was finally a place to be my true self where I could talk with other women about life and lift each other up,” says Kristy.

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