Chronological Age: 5
Developmental Age: 2
Therapies: Speech, Occupational, Physical, Equine and ABA
Parents: Brittany & Travis Kessy
Kabuki Symptoms: Tanner has facial features, padded finger pads, toe length differences, ear abnormalities, visual challenges, poor spatial reasoning, hypotonia, oral motor challenges such as drooling and global developmental delay. His parents say that his eyelashes and hairiness can be attributed to either his Kabuki Syndrome or Mediterranean heritage, or both.
Therapies: Tanner receives therapies every day except Sundays. He goes to speech therapy in a clinical setting twice a week. He also receives occupational and physical therapies through California Children’s Services (CCS) twice a week, and private occupational therapy, once a week. In addition, he attends special education public preschool 5 days a week where he receives speech, occupational and physical therapies as well as being taught how use his Alternative Augmentative Communication (AAC) device for his expressive language. Finally, he enjoys his equine assisted speech therapy, which is their “Family Fun Time”. Tanner was approved for Applied Behavioral Analysis (ABA) therapy through the regional center, but his schedule is so full, his parents decided to hold off for the time being.
School: Tanner has had multiple Individual Education Plan (IEP) meetings in his first year of attending school. The school district resisted giving him a dedicated paraprofessional (aide) after losing him for twenty minutes when he eloped. After persistent advocacy the school recognized the need and has assigned an aide that he loves. The school has also issued the accommodation of an Augmentative Alternative Communication (AAC) device.
Does Tanner have any siblings? “Just a one-eyed dog named Baxter”.
What are his likes and dislikes? “Tanner loves music, Disney movies (with music only thank you), playgrounds, food (especially dessert), cars and trucks, marble run, magna tiles, mega blocks, paw patrol (the merchandise/clothes, not the show), logos; especially on cars. He has an amazing sense of humor and plays simple games. He has sensory challenges and doesn’t love sand. We believe Tanner is going to be a musician, chef, and/or computer genius (based solely on what he likes).”
“Tanner was born full term via emergency C-section after movements became undetectable to me. He was whisked away to the NICU for low blood sugar, and was very unstable for a few days with liver, lung, and heart complications. They told us there was a chance he wouldn’t make it. I had hand-foot-mouth at the time, so all the complications were attributed to the virus. Other than the first 10 or so minutes after birth, I didn’t get to see Tanner until 2 days later due to the virus (our pre-Covid quarantine training).
Travis, my husband, spent these days bouncing back and forth between Tanner and me while the lovely NICU nurses set up a private camera for us to view Tanner in real time (our pre-Covid Zoom training). The day I was discharged, we finally got to hold our baby, who was still filled with tubes. After 5 days, Tanner was stable, but he didn’t eat well enough to come home. At two weeks old, we were fortunate to bring Tanner home with no tubes attached and no idea why he struggled so much at birth.
We received great advice from a friend of a family member with NICU experience: “Say yes to everything they offer you.’ When the health services department offered a home health nurse visit, we said yes. After an assessment and initial visits, we said yes to Early Intervention and Tanner started infant stimulation therapy at 3 months old. Milestones became more and more delayed, therapies were added, and it was clear that Tanner had a tougher road than other babies we knew.
We saw a neurologist regularly and eventually he gave a diagnosis of hypotonic cerebral palsy (CP), though an MRI didn’t show the common patterns on his brain. The neurologist wasn’t fully convinced of CP and referred us for genetic testing. In the meantime, we got a diagnosis of spastic CP from an orthopedist who helped us apply to CCS for his therapies. We received uneventful results from the initial genetic testing
(chromosomal microarray and fragile X), but the geneticist wanted to test the whole exome. Insurance denied the test, and I began to research the appeal process. During this time, I scheduled a vacation from work to take Tanner to several specialists to check on various issues (heart murmur, GI issues, neurology, orthopedist check up, etc.), and my employer of 12 years decided that was a good time to terminate my position (which also terminated Tanner’s health insurance as they also refused to provide COBRA information).
We were fortunate to be able to afford healthcare through the marketplace and signed on with Kaiser, and I was fortunate to receive a job offer from a previous client, just two business days later. I disclosed Tanner’s health issues, and they still insisted that I join the team in a permanent remote capacity. Kaiser was quick to initiate genetic exome testing, and we were told that our odds of a positive result were very low based on clinical observation. After months, I contacted them about why we weren’t notified yet, and they said we’d need to set an appointment. That’s when we knew something genetic was going on. On June 22, 2021, Tanner finally had a confirmed diagnosis of Kabuki syndrome.
What impact has having a child with Kabuki had on your family? How has being a Kabuki parent changed you?
“It’s been a roller coaster! First there was a lot of guilt when we thought it was Cerebral Palsy. ‘Why didn’t I go to the ER earlier or learn about various treatments to request that could have helped, etc.’. Then once we got the Kabuki Syndrome diagnosis, there was a bit of (illogical) relief that I didn’t “cause” his struggles. I’m not totally through the mourning process yet, but I like to stay hopeful that Tanner will have a great life in his own special way. We feel lucky to have him in our home and capable of tackling the challenges as a team. We usually work together and have learned that we have more patience than we ever imagined. We’re still easing into what Kabuki means for Tanner and are slowly working towards milestones.
The diagnosis didn’t change much in our day-to-day lives, including the six days a week of therapies. What the diagnosis did do for us, was alleviate the senseless guilt of “causing” what we thought was cerebral palsy. The diagnosis gave us a reference point when speaking with doctors, specialists, and educational personnel about Tanner’s unique needs and requirements. Lastly, the diagnosis led us to a community of Kabuki families and connected, even normalized our chaotic daily lives. We share joy in other families’ milestones and share the sorrow in the incredible losses. We still grieve the child we envisioned, but that person was never real, anyways. The boy who laughs and dances constantly, has the purest optimism that no danger exists in this world, who communicates with squeals, an iPad, and by throwing toys in frustration, and who works his tail off in therapy; that’s the child who fills our home with love… and sometimes frustration… but always plenty of love. That boy is Tanner."
Do you have a support network of family and friends?
“Travis is a rock. We are both pretty intense about supporting Tanner’s development. Gigi, Travis’ mother, and my mother Gaga, are both integral in his caretaking. We aren’t always graceful throughout the journey, but we’ve hit a good stride lately and insist on making it work. At this point, we both work full time. I am attending online university classes as well. We’re very lucky to have our social support network."
What advice do you have for other Kabuki parents?
“My advice would be that you can’t take “no” for an answer if it feels wrong. This ripples through the multiple intersections of life, including insurance companies, social service agencies, doctors, school district, and the negative prognoses. We make sure not to isolate as a family and do not apologize for Tanner’s behavior. We view his human rights as equal to everyone else’s and try to socialize him with other children as much as possible. We strive for a semblance of “normal” as much as we can. We celebrate victories tremendously and do our best to enjoy this crazy ride. It’s not always great, but there’s always more good stuff to come!”
What do you want parents of neuro-typical children to know about raising a child with Kabuki Syndrome?
“I’d say to please be empathetic of other parents because it’s somewhat of an invisible disability. So, if my son is yelling at a restaurant, please don’t assume I’m a bad parent or that I should be harsher to quiet him down. We try to do the positive parenting tactics, which may look like a lack of discipline to you. What you may not know is that if we were harsh with Tanner, his life would be nothing but negative interactions and punishments. Tanner is a real person whom we intend to develop into an adult with confidence and self-esteem regardless of his limitations. Please, don’t take for granted that your children may enjoy some privileges by being able bodied and minded. Please, don’t tell me I’m lucky my son isn’t walking or talking yet because your kids are so annoying or it’s hard to stop them from doing things. Please understand, that when I fight for special accommodations for my son, it is with the intent that my child be allowed to participate and not to limit your child’s resources or dampen their experience. Please know that your reactions and comments will shape how your children treat special needs individuals for the rest of their lives. Please be kind.”
Spotlight Writer: Stacy Limperis