Cognitive Age: 2
Therapies: Occupational, Physical, Speech and Feeding Therapies
Siblings: Issa (5)
Parents: Marko and Damaris Hinic
Kabuki Symptoms: Feeding difficulty, reflux, swallowing difficulty, chronic ear infections resulting in myringotomy and tubes placed, mild hearing loss in both ears
Symptoms which may or may not be Kabuki linked: frenectomy of tongue, unicoronal synostosis
Danilo’s Story: After already having a rough pregnancy with their first child, Damaris and Marko already knew how to handle challenges. With Issa, though, everything turned out fine. Danilo was a different story. Damaris was forced to stop working at 31 weeks and became a high-risk patient. She was diagnosed with Intrauterine Growth Restriction, or IUGR, which refers to abnormal growth of a baby while in the mother's womb. She wasn't gaining weight and neither was Danilo, so she was put on bed rest and told to reduce as much stress as she could and eat healthier. Even with that, Danilo still decided that he wanted to come early and was born at 36 weeks via C-Section.
Because of his size and being pre-term, Danilo was sent to the NICU at the local hospital where he was delivered. He stayed there for about 3 days, during which the Hinic's did visual genetic testing via webcam where a team looked at Danilo and everything came back normal. They were sent home and everything seemed to be okay. At least it seemed that way until the Hinic's noticed that the shape of Danilo's head was not quite right. They began to ask questions. One of Danilo's doctors suggested craniosynostosis, which turned out to be an accurate diagnosis. Craniosynostosis occurs when the skull bones fuse prematurely, whether it be in the womb or shortly after birth.
Danilo underwent cranial vault reconstruction in May 2017, at just 10 months of age. The surgery was a success and recovery was smooth, something the Hinic's attribute to the team of doctors who followed Danilo through the procedure.
Aside from craniosynostosis, Danilo also had trouble with feeding and gaining weight, and he was delayed in walking and talking. The Hinic's were sent back to see a geneticist, mostly to rule out anything genetic. That's when everything started going a little crazy with lots of twists and turns, and in the end bloodwork was needed to determine the cause of Danilo's problems. Damaris says, "Waiting for the results was a nightmare. Reading about Kabuki online was not the most comforting thing to do." And if you've ever had to wait for whole exome sequencing, which can take 4 months to come back, you know the agony of waiting. Jumping at every call. Researching what you can online, but trying not to scare yourself at the same time. It's daunting, to say the least!
The highly anticipated call came when the Hinic's were out grocery shopping. It was a shock, as it is to most of us when we received our own diagnoses. So Damaris and Marko educated themselves. They connected with other Kabuki syndrome parents and leaned on friends and family for support. And they slowly came to realize that it was not the end of the world. That Kabuki makes Danilo special.
Due to Danilo's feeding issues, a G-tube was placed in March of 2019. At that time, he also had his adenoids removed and tubes placed in his ears. The hearing loss in his right ear is permanent, but they don't know yet if the left ear loss will return or not.
"Despite everything that happened and that will happen, Danilo is one happy boy," says Damaris. For her, raising a child with Kabuki hasn't been too different so far. That does not mean it hasn't been challenging and it has definitely been emotionally draining. It just takes Danilo a little longer to reach his milestones, and the Hinic's firmly believe that his future will not change, that he will be a mostly normal man doing every day things. I just might take him a little longer to get there.
Danilo’s Favorites: "Danilo loves music and dancing. Music changes his mood it makes him happy and redirects his attention. He loves playing with our dog Oliver and his older sister. Food is something that he can never get enough of, but it was not like that in the beginning. He has a unique personality, but still really lovable and sweet."
Danilo’s Relationship With His Siblings: "They have a good relationship. They play, fight and above all, they love each other."
Advice for Kabuki families: "We would like to tell them to stay strong. It’s hard to accept the fact that your baby has a syndrome and that might look just a little different from the other kids, but he/she is still your perfect baby and no matter what, and he/she will always be perfect to you. Also, God will not give you something that you cannot handle. Embrace yourself, be proud and stand tall next to your KK, everything will be ok."
Advice for parents of “typical” children: "I would like for parents to teach their kids to be respectful, kind and accept other kids. To explain that we are all different but the same in so many ways. "
How Danilo has impacted the family: Danilo was very recently diagnosed, so the impact has not been noticed as of yet. But the Hinic's love him just as much as they love Issa, and will continue to advocate for his needs and make any adjustments needed for Danilo!
Danilo Hinic has had a bit of a rough start, but like most Kabuki kids, he isn't letting it slow him down or make him grumpy! He's a happy toddler with a bright future, one who has loving parents and a fantastic big sister to help him through any tough times that might come their way. With the love and support of their family and friends, there is no doubt that the Hinic's can overcome anything that is thrown their way. And it's likely that Danilo will come out of everything with that bright Kabuki smile on his face!