Sophia's Dream Journal
Motto: "I Can Do It"
Diagnosis: Chiari Malformation,
Chromosome Duplication 1Q21.1
High School Team: Westlake Cheer
This past December, 11-year-old CC4C Child Sophia celebrated a milestone most kids never have to dream of –their first three-year stretch without a return to the hospital for a procedure or test. Having battled a very rare combination of diagnoses since Sophia was an infant, Kristy said, “At that point I realized all those years of struggling through recovery, doctor appointments, and questioning deserve to be celebrated.” She reveled in a sense of normalcy after over a decade of fighting for Sophia’s healing.
Finding hope and joy during the hard times is essential to our families’ emotional healing. CC4C creates unforgettable memory-making experiences to help uplift our children, who are everyday heroes that deserve to be celebrated!
We matched Sophia with Westlake High School Cheer as an honorary member of the team and Kristy describes this experience as an absolute dream for Sophia. “Everyone involved with Westlake Cheer has gone above and beyond to make sure Sophia stays uplifted. They celebrated her birthday and bought her new school supplies. They know what her favorite things are and tailor her experiences to that.”
This past fall, our medically fragile CC4C children were on strict quarantine due to COVID-19, so we safely celebrated each of our Champion Children from a distance with a personalized car parade at our Parade 2 Uplift. Sophia served as grand marshal and guest of honor of her parade, waving princess-style from a convertible in her cheer uniform while Westlake Cheer and Band serenaded her.
Kristy and Sophia also attended our annual adaptive ski trip at the National Ability Center in Park City, UT. Kristy says, “The ski trip was an incredible bonding experience for everyone. It was so much fun to share the experience with Sophia, but also bonding with all of the other CC4C families. I wouldn’t trade experience that for anything.”
But the biggest celebration of all has been Sophia’s growth through her many procedures and 9 diagnoses. She continues to stay healthy and out of the hospital – and even recently made honor roll, even through a school year fraught with learning challenges due to COVID-19. Kristy says, “I never thought I’d be so grateful for something as simple as Sophia being nervous over a STAAR test.”
This coming school year, Sophia will help “her” team welcome another CC4C honorary child to Westlake Cheer – coming full circle to serve as a source of inspiration and cheerleader for another child walking the rare journey alongside her.
“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.
Babies come into the world wrapped in so many hopes and dreams - but many of our CC4C families are quickly forced to shift to new dreams: for healing and a cure.
At just 2 months old, CC4C Child Sophia was referred to a cardiologist and geneticist due to her facial features and rapid heart rate. The cardiologist detected an extra valve on Sophia's heart and recommended eventual surgery to plug the valve. Additionally, the genetic test showed a very rare chromosome duplication 1Q21.1, which has no previous medical research or knowledge.
For over a decade, Sophia and her family have been on a journey towards healing that has involved multiple cranial surgeries, a new diagnosis Chiari Malformation (involving the cerebellar tonsils at the base of her brain), and a life-threatening spinal meningitis infection. They have celebrated progress with each step, but never made it longer than a 2 year stretch before going back to the hospital for yet another procedure.
Each new procedure and diagnosis brought new doctors. Each one asked Sophia’s mom, Kristy, to re-hash Sophia’s extensive medical history – forcing Kristy to re-live the nightmares they had endured.
Over time, 24 doctors would join Team Sophia.
Sophia’s experience is not uncommon - CC4C Children see an average of 8-12 physicians in their journeys to healing. Their paths are fraught with tests, procedures, and sometimes lengthy waits and travel to see specialists. There are many, many costs associated that are not covered by insurance. CC4C supports families with financial provisions for medical expenses not covered by insurance.