Hello! Thank you for visiting All Things Kabuki. Here you'll learn a little about our family, Rikki's journey, and why I have such a passion to share Kabuki with all of you.
My name is Rene King and I live in Wasilla, Alaska (USA). I'm married to an amazing soldier that has stood by my side through this incredibly humbling journey. We have two children. Our son Christian is now an adult, and has always been his sisters secret hero. He, like most special needs siblings, is one of many unsung heroes. Our daughter Rikki is 16. She's a feisty little girl with a heart of gold; She is our beautiful Kabuki Kid (KK).
Rikki was born on 2 August 2001 at Elmendorf AFB, Alaska. Medical personnel would spend 90 seconds trying to resuscitate Rikki. It would be another 48 hours before the hospital would transport Rikki to a civilian Neonatal Intensive Care Unit, our new home away from home. Rikki had multiple complications at birth and was discharged from the hospital with three surgeries on record (imperforate anus, nissen fundoplication and a feeding tube.) We left the NICU with the understanding that our daughter would likely never have the ability to eat with her mouth, talk, or even walk. So many questions, no answers and no diagnosis.
In November 2001, Dr. Roberta Pagon from the Seattle Children’s Hospital Genetics Clinic met Rikki and within minutes had clinically diagnosed her with Kabuki Syndrome. I recall the first words out of my mouth being, “What is that?” As every other Kabuki parent knows, that very question would play like a broken record, with every mention of Kabuki Syndrome.
In November 2002 our little warrior did what they said she never would. She had ate and drank consistently by mouth for 30 consecutive days. Her Mic-Key Button was removed and the hole in her stomach closed. Rikki was no longer dependent on a feeding tube and pump! While this was a day to celebrate, watching the GI doc remove her button and close the hole in her stomach also proved to be a bit terrifying too. The beautiful girl they said would probably never use a cup or a spoon, just defied the odds!
As of the close of 2016, Rikki has undergone anesthesia for 33 medical procedures. She’s had multiple procedures on her teeth and eyes. She has had the ossicular bones in her left ear removed and replaced with prosthetic bones and titanium. Rikki has had a pacemaker like device temporarily implanted for an interstim trial, has had her tonsils and adenoids removed, a nissen (tummy wrap), feeding tube placed, imperforate anus corrected, and a dislocating patella repaired. Most recently she's had to endure a partial vulvectomy and had the inferior oblique muscle removed from her right eye. Rikki undergoes anesthesia for even the simplest procedures; Procedures no child should ever have to experience. Her history includes multiple botox bladder injections, MRI's, teeth cleanings, multiple cystoscopies and a vaginoscopy.
Rikki experiences MANY of the common traits of Kabuki. She was clinically diagnosed almost immediately due to her prominent facial features. She is developmentally delayed with an IQ of 49. Rikki continues to struggle with low muscle tone, is 60% deaf and requires hearing aids and wears glasses as a result of strabismus, amblyopia and astigmatism. She will require physical therapy (for low tone, gait and knee rehab) for many years, occupational therapy for much of the same, and speech therapy for delayed speech. Rikki has sleep apnea, a leak in her aortic valve, kidney deformities including one pelvic, bladder difficulties, Hashimoto's thyroiditis, sensory modulation disorder, PICA, Insomnia and Reactive Airway Disease. She also has mild scoliosis, is missing a rib and in January 2014 was diagnosed with Autism Spectrum Disorder, anxiety disorders and Intellectual Disability, Moderate.
Just like any other Kabuki parent will say, my child doesn’t have an easy life. I am however so thankful that I’m able to say she does have a good life. Rikki’s love for Christ is evident and that love overflows and allows her the opportunity to touch the lives of many people she meets. This beautiful girl is an inspiration to me. She has taught me what unconditional love is.
While it is often a struggle, I am thankful that Rikki has overcome so many obstacles. I am thankful that she has an older brother that loves and accepts her for who she is and how God designed her. That he is willing to protect her from those that mean harm. I am thankful for all of you that are reading this and those that share our vision to raise awareness about Kabuki Syndrome. For my parents and siblings who love and encourage Rikki, and stand by her side during the difficult days. And more than ever, I am eternally grateful for my husband, who loves me on my good days and bad, and continues to hold my hand on this journey … Growing Up Kabuki.
Follow our journey on my Facebook blog Finding Hope: Kabuki, Faith & Army Life @ Facebook.com/KabukiMom