Katrina Miller

Age:21

Cognitive Age: 12

Therapies: Speech, occupational, physical, music and vision therapies until age 17

Schooling: “She had an IEP in a special ed classroom with an aide to go into regular classes. She did poorly in the regular school system. She is now in pre-college program for special needs and doing very well. She is now reading at grade level but writing, spelling and math are still very poor.”

Siblings: Chris (31), Patt (30), Shannon (28), and Jonathon (15)

Parents: Cathy and John Miller

Kabuki Symptoms: Deaf/Hard of Hearing, Reflux, hip problems – bursitis or impingement, VSD/PAPVR repairs with current murmur, stenosis, and neurogenic cardiac syncope. Possible immune issues requiring IVg treatments, Asthma, decreased PFT’s, strabismus and ptosis. Dislocates knees easily.

 

Katrina’s Story: Katrina has always done things in her own way and on her own timeline, and her birth was no different. She decided that she wasn’t going to wait until she was full-term to enter this world, and was born prematurely at 32 weeks gestation. Still doing her own thing, Cathy underwent an emergency C-section to deliver her little miracle. The premature birth landed Katrina in the NICU for 77 days, due to low APGAR scores and needing blow-by oxygen. During this time she had her first surgery: G-tube placement at one month of age.

 

When Cathy was pregnant with Katrina, there were no known issues with her baby. When she was 5 months pregnant, though, Cathy was raped by Katrina’s biological father. Cathy ended up with pre-eclampsia (high blood pressure) and placental damage. Due to Katrina coming early and ending up with the NICU for so long, Cathy was unable to remove herself from the situation until Katrina was 4 months old. With no support system to speak of, Cathy relied on the power of prayer. Even with those prayers, doctors did not discover Katrina’s submucosal cleft palate until she was 5 years old. Once it was repaired, Katrina was able to have her G-tube removed. Cathy is now happily remarried to an amazing man, John, who adopted Katrina as soon as her biological father made it clear he wasn’t interested in a relationship with his daughter. Around that same time, Jonathon was born and their family was complete.

 

Now a thriving adult, Katrina has been through the ringer. She’s had 54 surgeries in total, two of them this past summer. Her surgeries include one open heart (10 months of age), two gastro procedures, one knee surgery to repair the MPL, 11 sets of ear tubes, two tympanoplasties, adenoids removed, two cleft palate repairs, multiple eye surgeries and two IUD placements. On top of this, she has undergone multiple tests and imaging procedures which required anesthesia. Every surgery has gone well with typical recovery time, except for one set. In 2008, Katrina had three procedures done at once: strabismus correction, PE tubes and cleft palate tightening. After this, she ended up with sepsis, pneumonia and adrenal gland failure, which kept her on a ventilator for 10 days. It was intended as an outpatient procedure, but as Kabuki kids like to do, Katrina threw a wrench in those plans!

Katrina’s Favorites: “She loves to ride horses, bowl, shop, read, talk, and girl time. She wants to get married and have kids. She dislikes helping around the house and personal care. She loves music and has written 2 songs.”

Katrina’s Relationship With Her Siblings: “The two older boys live out of state so it is limited. She has a good relationship with her older sister, but does not see her very much. She lives with her youngest brother and they fight often. She likes to play mother and starts fights by trying to tell him how to do things.”

Advice for Kabuki families: “You need a lot of patience. They are very loving but can have great difficulty understanding idioms or gray areas in life like sarcasm and humor.”

Advice for parents of “typical” children: “Raising a child with Kabuki is difficult. Many do not understand what it is or how to interact with them. Katrina is extremely loving, has an awesome memory – never forgets a birthday. Loves her family. Tries very hard to progress in school so she can go to college someday. She does not understand sarcasm or humor, which makes it difficult when discussing certain things – she often thinks people are “fighting” when they are just goofing off.”

How Katrina has impacted the family: “It has caused many appointments and much stress but we handle it well. How has being a Kabuki parent changed you? I am much more in tune with my children and their needs. I have learned to communicate in various ways. I have to pay close attention to her body language many times to see if she is anxious or in pain. It has been harder on the rest of the family when she butts into conversations and starts fights because she does not understand what is really going on.”

 

Katrina is slowly working her way toward independence. She may not ever live on her own, but she values what she can do, including working 

as a hostess at Longhorn and continuing her education at home with Cathy. She had a rough go ahead of her even before she was born and Kabuki was discovered, but she has persevered. She hasn’t quit. She continues to fight every day to live a full and happy life, and she does it with a smile on her face.

 

The world of Kabuki adults is growing as our Kabuki kids continue to be discovered. Each one of them has their own struggles and joys, their own way of getting through the day. But there is one thing that is common among them all, and that is the ability to pull through anything thrown at them with a smile on their faces!

***Editor’s note: I had the pleasure of meeting Katrina and Cathy in person at the Kabuki gathering in Cleveland. It was an instant bond! Katrina is a joy to be around, and it’s clear that she knows she is loved. I should also mention that Katrina has a special relationship with another Kabuki adult, Dylan Clark, who was one of the first people to have a story written. He is pictured above at a dance with Katrina.

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome. 

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