Cognitive Age: 1
Therapies: Physical & Occupational Therapy
Siblings: Katherine (9) and Kaylee (6)
Parents: Holly & David Veronda
Kabuki Symptoms: Hypotonia, feeding difficulty (tube fed), slow weight gain, hip dislocations, high arched palate, long eyelashes, global developmental delay.
Jacob's Story: Holly’s pregnancy with Jacob was not like her first two. Katherine and Kaylee were pretty typical pregnancies and both girls are very typical girls. But Holly and David weren’t done, there would be one more child to make their family whole: Jacob. Jacob, like most Kabuki kids, didn’t do things the way his sisters did, even in utero.
At 30 weeks gestation, Holly underwent a stress test. She had low fluid, and when Jacob failed the stress test, it was determined that he had to enter the world. Luckily, even though this was a surprise for the Veronda’s, they have a very strong support system. Thank goodness, too, because Jacob would spend the next 56 days in the NICU.
At birth, Jacob weighed a mere 2 pounds, 13 ounces. The doctors could not figure out why he was so small! Two weeks after he was born, Jacob was transferred from Silver Cross Hospital to Lurie Children’s. It was there that doctors discovered that Jacob’s brain ventricles were slightly enlarged, and when he was diagnosed with Kabuki syndrome type 2. He was later transferred back to Silver Cross for the remainder of his NICU stay, until he finally hit the 4-pound required for discharge. He went home with an NG tube, but he got to go home!
From birth, Jacob struggled to gain weight and had a weak sucking ability. When he was two, he finally had his G-tube placed and he went from 11 pounds to 20 pounds! As we all know with Kabuki, that’s a huge jump and such a great response to the change! Luckily for little Jacob, that is the only surgery he’s had to go through. Hopefully it stays that way!
Due to Jacob’s ongoing medical issues, Holly was forced to leave college where she was just 300 hours shy of earning her degree in education. But as a parent, you do whatever is necessary for your children. Many of our Kabuki families are single-income households for this very reason. Thankfully, David has an amazing job with International Brotherhood of Electrical Workers (IBEW) local 176 as an electrician. His boss is very flexible with David’s family needs and works with David on scheduling around appointments and procedures.
Currently, Jacob is 3 years old. He cannot sit unassisted, walk or talk. He receives weekly physical and occupational therapy. He has AFO’s to help with the walking process and recently received an adaptive chair and stander equipment for home use. He’s not school age yet, so the Veronda’s work with him at home on various therapies and life skills to help him prepare for when he is old enough to attend. Despite it all, Jacob keeps that adorable Kabuki smile on his face!
Jacob’s Favorites: “Jacob loves music and will dance to Thomas Rhett, Kane Brown, AC/DC, and Chris Lane. He loves to clap, laugh and smile. He also loves our Golden Retriever.”
Jacob’s Relationship With His Sisters: “Both big sisters love him and always show interest in how his equipment works. They even get into fights over whose turn it is to start his G-tube machine!”
Advice for Kabuki families: “Think of having a child with Kabuki as opening a present on Christmas morning. It might be something you really want, or it might be something you think to yourself, "What in the world am I gonna do with this?" Kabuki kids, just like all of us, have good days and bad days. Don't stress about the future and take each day as a gift.”
Advice for parents of “typical” children: “Everything is one step forward and two steps back.”
How Jacob has impacted the family: “Having a child with Kabuki has changed my life in many ways. I went from being 300 hours short of being a teacher to having to resign from college, leave my job and devote my entire life to meeting Jake's needs. He has changed the entire way I look at everyday life, and I would not trade a single second. When we got his diagnosis, I thought it was the worst news any parent can hear, and no matter where we turned, there were always more issues being put on his plate. Then one day I realized, you can’t look too far in the future, and you have to focus on today.”
Katherine and Kaylee are perfect big sisters, doting on their little brother and helping mom and dad make sure Jacob has what he needs. David prioritizes his family needs with his boss, who is graciously flexible with their needs. Holly made some really big adjustments and sacrifices to help care for her son, and the rest of the family and their support system have wrapped their arms around Jacob to provide him with the love and care he needs. He definitely made the Veronda family complete!