Patience and Hard Work Lead to Progress

After spending the first few weeks of his life in the progressive care unit, Carter Jackson, now 7 years old, was diagnosed with a very rare genetic disorder called Tetrasomy 18p. Carter’s parents, Jamie and Mike, looked back on that time as new parents and remembered, “Our emotions were all over the place.”

Carter has been a patient of Children’s Hospital of Richmond at VCU (CHoR) since he was one month old, and he still receives occupational, physical, speech, and feeding therapies on a weekly basis. A variety of other medical conditions—including bladder reflux and eosinophilic esophagitis, which caused great difficulty with eating and drinking—combined to cause Carter to miss many early developmental milestones. He was seven months old when he first learned to roll over, one year old when he began sitting up unassisted, and nearly three years old when he learned to walk.

“While we have had to remain patient with most milestones in Carter’s life, he works hard to overcome anything in his way,” Jamie said. “He has made such progress over the last couple of years.”

Carter learned to use sign language to communicate and recently began verbalizing certain things like calling for his mom, dad, and younger brother, Brayden. Most of his nourishment is still received by feeding tube, but Carter is continuing to make strides with practicing eating foods like avocado and green beans by mouth.

When he isn’t hard at work developing new skills, Carter enjoys many fun activities like visiting the mall to ride the miniature train, listening to live music, and playing with trucks and cars. “He really loves spending time with his family and friends,” Jamie added, “And he wants to have a party so he can see everyone almost every day!”