Corbins Journey

The Jones Family

Corbin Jones began his medically complex journey before he was born due to a diagnosis of twin-to-twin transfusion syndrome. For twins who have twin-to-twin transfusion syndrome, one twin (considered the donor twin) is more affected. In the case of Corbin and his twin brother, Corbin was the donor twin.

Now three years old, Corbin is on continuous feeds via GJ tube, trach and supplemental oxygen dependent, and has a colostomy and VP shunt placed. He is diagnosed with spastic quadriplegic cerebral palsy, dysautonomia, neurogenic bowel, chronic lung disease, and hydrocephalous. Despite his many diagnoses, Corbin’s mom, Kara, wants others to know that he is much more than his medical journey alone. “I wish more people understood that the simple things matter the most. Just because Corbin is nonverbal, non-mobile and developmentally delayed he is still thriving and the happiest little boy despite his medical diagnosis’.”

While caring for Corbin and his specific needs the last three years, his family has needed to adjust and find a new normal—a normal that sometimes involves missing out. “We miss out on a lot of things as a family because Corbin doesn’t tolerate certain temperatures or loud environments and he gets overstimulated easily. So, my husband or I stay home with Corbin and the other will take our other 2 boys to family gatherings or events. Just because we may not be able to go to something doesn’t mean we can’t still be invited.” Kara shared. “We’ve also had a lot of hospital stays, doctors’ appointments, therapies, etc., that take away from time as a family.” 

Thankfully, The Jones family discovered Wichita’s Littlest Heroes (WLH) right before Corbin’s first birthday. “The connection with other families and being able to get to know other families like ours is nice because having a medically complex child can feel very isolating and lonely at times.” Kara said. WLH offers support for families of medically complex children in endless ways, including peer/parent support, financial aid, and offering many social functions a year where families can come together to connect, have fun, and be celebrated. Kara shared, “I love that they have events for families like ours so we can feel like we belong. Often times when we are in public people are staring at Corbin or asking what is wrong with him. At WLH events everyone is so welcoming and non-judgmental.”

For families like Corbin’s, who can often feel unseen and unsupported, WLH steps in to fill the gaps. “They have been a great support system for our family. If I ever need to go to lunch or have a vent session, they are there to lean on and help pick me up. They understand that having a medically complex child is challenging and exhausting. They are always quick to send a “pick me up” to Corbin when he is in the hospital. It’s nice to feel like we have a village that we can lean on that understands the struggles and frustrations that come with this life.” Kara said. “I often refer them to families like ours because of the support they provide!”