Celia is one of five children, which includes her twin brother Corey. At approximately age one,
her mom, Teresa, noticed that Celia was not developing at the same rate as her brother. Celia's parents began what ended up being a very long journey to find out why. The journey included numerous visits to local doctors and specialists, and eventually took them to Children’s Mercy Hospital in Kansas City. For more than a year various tests were run, diagnoses (dystonia, epilepsy and stenosis) were made, and treatment plans applied - but little Celia did not make significant progress. Between May and August in 2018, there were seven trips to Kansas City, in response to the ups and downs in Celia’s condition. It was on one of those visits that a referral for genetic testing revealed that Celia has a very rare condition, the PDE2A gene.
She is the fifth child known to have this condition, and the only one in the United States.
On one of the many hospitalizations to diagnose and treat Celia, she was intubated with a tube that was the correct size for her age but was too large for her little body. As a result, a
permanent trach had to be inserted, along with oxygen tubing.
The year 2020 was especially rough for the family. On the positive side, Celia was granted a trip to Disneyland through the Make-A-Wish Foundation. This pleasant experience was followed by a series of serious health setbacks which created mountains of concern for the family. However this family of ‘fighters’ survived those scares and Celia is now doing well.
This little seven-year-old easily personifies the definition of a little “Hero” as she holds her own
against the medical odds she faces. In fact, Teresa describes her a being a tiny bit ‘ornery’. The search for answers and the need for specialized care, eventually forced Teresa to quit her job, but having only one income has not diminished the family’s commitment to caring for Celia. Teresa is particularly proud of little Corey who, at age seven, is very attentive to his twin sister and often is the first to address a need, such as replacing her oxygen tube when Celia takes it out. He has told his mother that when he grows up, he plans to live with his sister and take care of her. However he also expresses the fear that he might not know how. Teresa a ssures him that he will learn, and she is teaching him how to help with her care even now.
Despite the family’s closeness and attention to Celia’s needs, Teresa has found Wichita’s Littlest Heroes to be a unique resource for her family. She first learned of WLH when she picked up literature at an information fair she attended. She did not initially think it was for families like hers, but after Celia’s health challenges in 2020, she turned to the agency for support. She was strengthened by being able to lean on and share experiences with other parents who were facing similar medical challenges with their children.
In addition to the moral support which WLH offers, Teresa’s family has also benefited from the
financial assistance which is available. For instance, providing gas cards for families that have to travel to places like Kansas City (or elsewhere) to obtain treatment for their children, means
one less worry for the parents. Another way that WLH has helped this family, is by providing
school supplies for the children, sparing them yet another expense.
Teresa hopes that sharing her story will help supporters of Wichita’s Littlest Heroes understand
how important it is to have this resource for families whose children are medically fragile, and
who face unique challenges associated with their specialized care. While the diagnoses may be
different, families facing such challenges are being strengthened by having an organization that can connect them with others and provide the emotional and financial support they need.
