Claire 4 Rare Meets Harrison, More Than Kabuki Syndrome

Harrison’s Story

Hello everyone! Thank you to all who read last month’s column. It is greatly appreciated and I hope you were inspired. I am so excited to be writing our second Claire 4 Rare ​column. This month I had the privilege of interviewing a rockstar of a mom, Holly McNally. Holly’s son, Harrison, has a rare disease called Kabuki Syndrome. I thoroughly enjoyed learning about Harrison and his awe-inspiring tendency of proving people wrong. I hope you enjoy learning about Harrison’s story as much as I did! 

Kabuki syndrome is a congenital disorder of genetic origin. It is very rare affecting roughly one in 32,000 births. It impacts multiple parts of the body, with varying severity and every child with Kabuki is impacted differently. In two and half year-old Harrison’s case, he is​ missing part of his right clavicle, struggles with aspirations, has chronic hip issues, slightly deformed feet, a deformed vertebrate, a hole in his heart, kidney misplacement and hydronephrosis, as well as growth and speech delays. Little Harrison was diagnosed at just three months old after undergoing extensive genetic testing. Harrison has undergone multiple hip surgeries since birth. His very first surgery was at three months old. His second surgery was at one year old. After both surgeries Harrison had to wear a spica cast from his chest down to his ankles for an extended period of time. Since he was one month old Harrison has been in some kind of hip brace or cast during nights and he wears foot braces during the day. Holly says that Harrison lives an otherwise normal life. He spends his days climbing everything, pushing the limits, pulling his sister’s hair, and going crazy for Olaf. “If someone says he’s probably not going to be able to do something, he always proves them wrong.” Harrison has that fighting spirit and that undeniable need to prevail. 

Holly remembers the day Harrison was diagnosed on December 19, 2018. How does one react to such a diagnosis? At first Holly and her husband struggled to understand and make sense of the situation. “It was a relief to know we had an answer but a challenge to know that it was so rare, and it didn’t give us a lot of information.” Two and half years later, Holly and her husband say that they’re at a stable place and now it’s all about educating themselves and others about the disease. 

Holly is so proud of her son for his resilience and ability to connect with others in a special way. He’s been through so much and is still a happy loving child and as she says, “so it makes you kind of check yourself.” Harrison also has that indescribable glow that every rare child has. That unwavering hold he has on everyone he meets. Those eyes that carry a lifetime of pain but unfathomable strength and grace. 

One question I get asked frequently is whether or not I’d want to live a “normal” life if I could. So, naturally, I asked Holly the same question with a small modification. If you could give Harrison a “normal” life, would you? This is what Holly had to say. “I think as parents your answer is always going to be yes. For me, I think I would like to take away some of the pain, but I don’t think I would change his personality and I think that’s just part of Kabuki Syndrome. They’re just very happy, go-lucky kind of kids and that’s what maybe gets them through everything, is that personality.” I believe that all rare children have this unique personality and spark, and Harrison is no exception. 

Behind Harrison is a loving family. Harrison’s father, mother, and older sister, Mallory, play a huge role in his life. Mallory has turned into Harrison’s little cheerleader and encourages him during therapy and home exercises. The unspoken hero among them is Holly. Being a mother is already the hardest job on the planet. So, being a mother of a rare child is even harder, but that much more rewarding and inspiring. However, no mother ever expects to have a child with a rare disease or any medical needs whatsoever. In the spirit of supporting and encouraging new mothers of a rare child, Holly gave some words of wisdom.​ ​“Take it one day at a time. Don’t dwell on the unknowns because usually they’re going to prove you wrong. Celebrate the small victories because they may be small to other people but they’re huge to us.” Those are words to live by. 

What does “rare” mean to you

“​Before having a child with Kabuki, the word Rare made me think unique, different, exceptional. I think those words describe Harrison so well. He is one in a million. He has overcome so much but you would never know it. He lights up a room, is always happy, has never met a stranger, and impacts every single person he meets by making them smile. There is just something about him that draws you to him and makes you go – Wow he’s really special!” – Holly McNally 

If you are living with a rare disease or know someone who is, please contact me at ​claire.bevec@harmony4hope.org​. I would be honored to share their story here! If you don’t feel ready to do so, that’s ok too. I would be so happy to just meet and chat with you. I understand sometimes it’s hard to find someone to talk to who also knows what living with rare disease is really like. We’re rare, but we’re there!