Cognitive Age: 4
Therapies: School-provided speech and adaptive PE
Schooling: Reverse mainstream pre-K
Siblings: Jaden (10)
Parents: Curt Beyer & Tiana Capri
Kabuki Symptoms: Feeding difficulty (tube-fed for 2.5 years), hypotonia, high arched palate, long palpebral fissures, short fifth digits, butterfly vertebrae, Chriari I malformation, tethered spinal cord, tongue tie, elevated second toes on both feet
Cam's Story: When Tiana and Curt learned they were pregnant with their second child, they were elated. Their daughter, Jaden, would be a great big sister! Tiana’s pregnancy was relatively normal. They learned that their baby had a 2-vessel umbilical cord, which isn’t really a problem but was likely the first sign that something was off. Tiana also battled gestational diabetes, which she was able to manage with diet. Still, baby Camlan let them know early on that he would do things on his own timeline by entering the world four weeks early. He arrived by natural, unmedicated childbirth and despite being premature, only spent a routine two nights at the hospital.
Cam was unable to breastfeed. It was noted he had a high, arched palate and shortly after birth it was discovered he was tongue-tied. Even after the tongue tie was fixed, he was unable to nurse and was a slow bottle feeder. His suck, swallow and breathe rhythm was uncoordinated and he gained weight slowly, but he made progress.
When he was 5 months old, Cam caught pertussis. His already difficult feeding ability became even harder. He recovered slowly, and a few months later they learned that he had silent aspiration. An unexpected hospital stay led to new diagnoses: failure to thrive, hypotonia, Chiari I malformation and a tethered spinal cord. Cam left the hospital with an NG tube, which would be his placeholder until a G-tube was placed three months later. A month after that, he had his tethered cord surgically released. The stay also resulted in Cam’s eligibility for services through the state and county developmental service departments. He missed all of the typical physical milestones but has caught up on his own in most areas.
Shortly after he turned 1, Camlan was referred to a geneticist. It was then that he was diagnosed with Kabuki syndrome. However, since he qualified for therapy through the state, he has made leaps and bounds worth of progress. Initially, Cam’s speech in particular was difficult to understand and he was delayed in speaking at all. But he loves to talk and ask questions and narrate his own actions. Tiana says he “ALWAYS has something to say!”
Previously, Cam received cranio-sacral therapy, occupational therapy, feeding therapy, physical therapy and speech therapy. Today, Cam is 4 and is in his second year of preschool at the local public elementary school. He’s in a reverse mainstream room with an IEP. He has a lot of support there, the class is small and he receives speech and adaptive physical education as part of his school services. He also graduated from his G-tube, having it removed at the age of 3.5.
Cam’s Favorites: “Camlan loves routines, whether it’s through play or food or daily activities. He always asks what we’re doing today, including what’s for dinner. He also LOVES talking and pretending he is an actor. He likes to pretend we are characters from books or movies like Star Wars, The Incredibles, Despicable Me, and The Nightmare Before Christmas. He dislikes spiders! Camlan has recently expressed the desire to drive a car and I can only hope that he will be able to achieve this…at the appropriate age!!”
Cam’s Relationship With His Sister: “Camlan and Jaden are developing a close relationship as Camlan becomes older. They have a typical sibling relationship when there are moments of playing really well together and then bickering and screaming! Jaden is protective of him and does understand he is more unique than most little brothers.”
Advice for Kabuki families: “Change your expectations for your child but don’t necessarily lower them. Kabuki kids do things on their own timeline and often reach an inchstone or milestone when it’s completely unexpected. For example, if speech is delayed or doesn’t manifest, change your expectation to a new form of communication but don’t give up on your child’s ability to express themselves.”
Advice for parents of “typical” children: “Raising a child with Kabuki Syndrome seems to magnify the highs and lows of parenting. Things that are slightly difficult with neurotypical kids can be exponentially harder with a Kabuki kid, such as eating…the actual process of chewing and swallowing is a big challenge for most Kabuki kids and something most parents don’t ever need to contemplate. On the flip side, when a Kabuki kid takes their first step or says their first word it is SO much more meaningful. It opens the door to hope…hoping for more achievements no matter how big or small.”
How Cam has impacted the family: “Having a baby born with Kabuki Syndrome is difficult and, as all parents know, adds an extra layer of challenges in neearly every aspect of caregiving. The beginning of our journey was more difficult and Camlan wasn’t officially diagnosed until after his first birthday. Having a child with special needs has made me more compassionate, empathetic and also more assertive so that I may better advocate for his needs. I am also not as quick to judge others…usually!! My idea of what success in life means has also shifted. I want Camlan to be happy and proud of his achievements, no matter how significant society views them.”
Cam is an incredibly adorable little boy with the best curls you’ve ever seen. He’s full of life and energy and spunk. While the pandemic has limited the support Tiana and Curt receive from friends and family, Cam still enjoys a small amount of respite through the state’s department of developmental services. One of the things Tiana wrote is something we all truly need to hear and can definitely appreciate is, “Over time, I have learned to appreciate what he CAN do and the things that make him unique.” It is hard not to compare children to other children, as parents, as humans, that’s what we do. But no two kids are like, and ours? Our Kabuki kids are the life of the party. Embrace it!