Kabuki Syndrome - "I Sing The Body Eclectic"

Kabuki syndrome is a very rare and unique genetic condition whose wide-ranging effects can touch almost every organ system in an affected person’s body. Remarkably, it shows up differently in every person, and the ramifications can spin seemingly endless and often mysterious medical challenges for individuals and their families.

On this episode of One Rare Heart, we hear about the profound ways this disease has affected one family and their daughter. We also talk with a geneticist at Boston Children’s Hospital about what makes this disease so unique, and the challenges it presents to medical teams trying to coordinate care. A celebrated theater scholar at Brooklyn College, of the City University of New York also helps us explore the connection between Kabuki syndrome and the Japanese art form after which it was named, Kabuki theater.

On a personal note, this episode is deeply meaningful to me, as our daughter Grace was diagnosed with Kabuki syndrome. The way this disease manifested itself in her, led to a long and complicated medical journey, which included the first 18 months of her life being spent in the Cardiovascular Intensive Care Unit. In spite of that, she was always unapologetically herself, and shared with us the joy and love of connection that is a staple of individuals with Kabuki syndrome.

EPISODE GUESTS:

Rene King – Founder of All Things Kabuki (non-profit, and the only US patient advocacy group focused on Kabuki syndrome), and parent of Rikki, who has been diagnosed with Kabuki syndrome.

Dr. Olaf Bodamer – Assistant Chief of Genetics & Genomics, and Director of the Roya Kabuki Program at Boston Children’s Hospital, in Boston, MA.  Also, head of Bodamer Labs, which has a research focus in Kabuki syndrome.

Dr. Samuel Leiter – Distinguished Professor Emeritus of Theater at Brooklyn College, of the City University of New York. He is also an expert on Kabuki theater, and author of over 10 books on the subject. He also actively reviews current theater productions on his blog Theater’s Leiter Side and his Kabuki-focused Kabuki Woogie.

Episode Title Note: This episode's title is a reference to Walt Whitman's poem I Sing the Body Electric, which celebrates the human body, and lifts up all different types of bodies and people as beautifully equal. I love the implications for people and bodies that are different, complex, and often overlooked and undervalued as a result. He writes, "no matter who it is, [the body] is sacred. . . Each belongs here or anywhere just as much as the well-off, just as much as you. Each has his or her place in the procession."

Transcript

Derren Raser  0:01 
Have you ever received news that stopped you dead in your tracks? On a late July morning, my wife Lisa and I sent anxiously on one side of a dubiously thin privacy curtain in our daughter's shared double room in the Cardiovascular Intensive Care Unit. We were right in the middle of the second month of her stay, and there was no clear end in sight. She had come there on the day that she was born. But since her arrival, and initial open heart surgery, there had been a string of discoveries and subtle complications that had been quietly mounting. She'd not been gaining weight as quickly as the medical team had hoped. Her wounds from surgery had taken unusually long to heal. She had been unable to take the typical steps towards shedding her breathing tube and breathing on her own. And then there was the discovery of the cleft palate, the inexplicable pneumonia, and the mysterious issue with her lymphatic system. With what seemed like all of these gathering riddles in the dark, our team, in search of answers, encouraged us to enroll our daughter in a full genome sequencing study that was being offered at the hospital. After much deliberation, we'd agreed, and on this July day, we'd received word that the lab had completed the sequencing. We were now waiting for someone to come let us know that the doctor was ready to share the results. It was on that day that our doctor restlessly sat across the table and said, "the sequencing did come back positive for a diagnosis. Your daughter has something called Kabuki syndrome." To hear those words was shocking and confusing. But, it also provided a much needed answer to all the riddles and was the beginning of a larger and much more complicated journey into our daughter's complex and, at times, enigmatic health and development. Today on One Rare Heart, we begin the first of a two-part exploration into Kabuki syndrome, a very rare and unique genetic syndrome, whose wide ranging effects can touch almost every organ system in an affected person's body. Remarkably, it shows up differently in every person, and the ramifications can spin seemingly endless and often mysterious medical challenges for individuals and their families. In the next few moments, we will explore the origins of this unique and fascinating disease, and hear of the profound ways it has affected one family and their daughter. We will also talk with a physician at Boston Children's Hospital who is working to provide answers to many of these riddles and cohesion to what is often for people with Kabuki syndrome complex and disparate medical treatment. Coming up in just a few heartbeats - don't go away.

Rene King  2:42 
Under her state waiver, she has 61 current diagnosis.

Derren Raser  2:47 
This is Rene King talking about her daughter Rikki who has been diagnosed with Kabuki syndrome.

Rene King  2:53 
I knew something was not right with my pregnancy. And when Rikki was born, she was not breathing. Doctors clearly knew something was wrong, but they hadn't said anything specific.

Derren Raser  3:06 
As a result of some of these initial complications, after 48 hours Rikki was transferred from the military hospital where she was born to a nearby NICU.

Rene King  3:14 
So unfortunately, by the time she got there, she had aspiration pneumonia. The NICU found a slew of other problems. She was not well. She was so high maintenance that the nurses were having a hard time because she liked demanded basically one-on-one care. So she stayed in the NICU for about two and a half months. She got discharged with no diagnosis.

Derren Raser  3:37 
Unfortunately, this type of story is not uncommon. Many children born with Kabuki syndrome encounter significant challenges from the moment they arrive. And because this condition is so rare, many medical teams struggle to understand why these babies failed to thrive and initially experience difficulty in so many other areas.

Rene King  3:56 
When we finally got out of there, it was difficult. We were trying to learn to track - she had a heart monitor. It was trying times.

Derren Raser  4:06 
After languishing for some time without a diagnosis, a geneticist from Seattle Children's Hospital came to their area as part of a satellite clinic and finally gave the Kings what they were looking for - an answer.

Rene King  4:19 
I remember Dr. pagan coming into the room and she looked at Rikki and she said, "she Kabuki syndrome." I just looked at her like, "What!? What is that?"

Derren Raser  4:32 
At the time when the Kings initially received a diagnosis of Kabuki syndrome for their daughter, Rikki, little was known about this enigmatic disease. And though finally having a potential cause for the medical mysteries was a relief, resources for helping them learn more about Kabuki syndrome and understand how to move forward as a family and with Rikki's care are almost non-existent.

Rene King  4:53 
We were lucky to know, to have a reason. It, I think, gives you a little sense of peace as a parent. But, when nobody knows anything about this disease, you're kind of in a whole different world now. We were starting from ground zero.  It wasn't in the medical dictionary, no doctor up here knew anything about it and there were no other patients.

Derren Raser  5:17 
Like Rene King's initial reaction, you might also be wondering, what is Kabuki syndrome?

Well, there are a few important things to know. It is a rare disease, which occurs in approximately 1 in every 32,000 births worldwide. Though, some researchers believe it might actually be much more prevalent. The distinctive physical characteristics of Kabuki S yndrome were first described in Japan by doctors Niikawa and Kuroki in 1981, who connected some of these physical features to a popular Japanese art form known as Kabuki Theater, which became the namesake of this disease. Those characteristics include distinct facial features that create the illusion that individuals have unusually large eyes, which many people consider to be a beautiful trait. Features might also include prominent eyelashes, arched eyebrows, a broad nose with a flattened tip, and oftentimes large, unusually shaped ears. And as I mentioned with our daughter, Grace, and Rene's daughter Rikki, Kabuki syndrome often comes with a broad range of medical and behavioral issues as well. For individuals with Kabuki syndrome, their symptoms often occur on a spectrum, which means some individuals are only mildly affected, while others have more severe symptoms. And then there's everything else that exists in between. Having symptoms that occur on a spectrum is not unique to Kabuki syndrome, this is true of many other rare diseases as well. But, the fact that almost any system in the body can be affected is unique.

Dr. Olaf Bodamer  6:43 
Almost every organ system is involved to various degrees. So, I think that certainly stands out among many of the other rare disorders.

Derren Raser  6:57 
This is Dr. Olaf Bodamer, Assistant Chief of Genetics and Genomics, and Director of the Roya Kabuki Program at Boston Children's Hospital in Boston, Massachusetts. Just to give you an idea of the breadth of the symptoms, here are just a few that are common with Kabuki - and stay with me because the list is extensive. Congenital heart defects, hearing and vision problems, gastrointestinal issues, immune deficiencies (which result in frequent respiratory tract infections), autoimmune disorders, skeletal anomalies, seizures, cleft palate and dental abnormalities, low muscle tone, connective tissue problems (resulting in hyper flexibility and lacks joints), kidney issues, endocrine and lymphatic abnormalities, sleep disorders, varying degrees of developmental delays (including crawling, walking and speaking), and a spectrum of intellectual disability is also common. In addition to these medical issues, there are also behavioral effects as well, including sensory disorders, and many individuals are also diagnosed with Autism Spectrum Disorder, or have behavioral traits that overlap with Autism. Our daughter, Grace has been followed by more than 20 different medical specialties or services at one time or another - literally almost every specialty that our hospital has to offer. As you hear this list of symptoms, I think a natural question to ask is "why?" How could so many systems be affected by a small mutation to a single gene?

Dr. Olaf Bodamer  8:33 
The two genes involve the very large genes. So, they are among the largest genes in the human organism. The bigger the gene, the more prone the gene to genetic changes, to mutations.

Derren Raser  8:46 
That means that the size of these genes creates many more opportunities for unique mutations within each gene. And Dr. Bodamer says that even mutations in a small area of one of these genes can result in very different symptoms.

Dr. Olaf Bodamer  9:01 
There has been a recent publication actually from our colleagues in Manchester, UK that found that certain mutations within a very specific well defined area in the KMT2D gene results in a completely different phenotype.

Derren Raser  9:18 
In addition to this revelation, other factors like when the mutation occurred in embryonic development, and whether or not it occurred on the mother's or the father's copy of the DNA, all have an impact on the phenotypes that emerge in each individual.

Dr. Olaf Bodamer  9:32 
So, making sense out of all that is extremely challenging as you can appreciate.

Derren Raser  9:41 
There is one other aspect of the genetic underpinnings of Kabuki syndrome that is simply remarkable. Dr. Bodamer says that over 99% of Kabuki syndrome cases are what's known as "de novo," which means they are not inherited and instead are happening for the very first time. For this reason, he says it's possible that every single individual's genotype, or specific genetic mutation, may be completely unique, and in turn, their phenotype, or combination of symptoms, may be completely unique as well. Aside from the very small percentage of people that inherit this disease from a parent, most likely no individuals with Kabuki are really quite alike from a genetic perspective. It wasn't until 2010 that researchers at the University of Washington discovered that mutations in a gene known as KMT2D, was responsible for Kabuki syndrome in the majority of patients who were tested. Later, in 2012, a research team in Belgium discovered a second gene KTM6A, there was also responsible for causing Kabuki syndrome in a small percentage of individuals. The discovery of these two different, but related genes, combined with the growing availability of genetic tests, like whole genome sequencing, meant that doctors could finally offer a definitive diagnosis to families, which was a huge step forward. It also offered a new opportunity to study the underlying genetic mechanisms that cause Kabuki, which has led to further discovery and understanding. I asked Dr. Bodamer to explain these two genes and what they do.

Dr. Olaf Bodamer  11:19 
Those genes that cause Kabuki syndrome are what I call "master regulators." So, they regulate the ability of the organism to access genetic information, which is obviously very important for organ development, the way we look - everything is based on genetic information. And the two Kabuki genes they essentially provide either access to important genetic information during development or they actually deny accessibility to genetic information.

Derren Raser  11:55 
That genetic information acts as a sort of blueprint when the body is being built. Imagine these two Kabuki genes as the foreman or forewoman, making decisions about how the blueprints are implemented. As you can imagine, any changes they would make in the way the blueprints are being interpreted, or even not allowing access to whole sections of the blueprints at all, might significantly change the way that construction occurs, and in turn, alter the end result. If this were to happen, not everything in a building might work as it should, and some of those alterations could be structurally unsound, or even dangerous. This is roughly analogous to what happens with these two genes KMT2D and KDM6A.

And despite often navigating a variety of medical and behavioral complexities, individuals with Kabuki syndrome integrate in very meaningful ways into their families and communities. Though delayed, children often attend school alongside their typically-developing peers, and many are involved in extracurricular activities. Some individuals with Kabuki syndrome even engage in advocacy work of their own. There's an adult in the United Kingdom who regularly post videos sharing about his experience living and working with Kabuki syndrome. And they also often recites poetry, which he has a passion for writing. Rikki King, Rene's daughter, volunteers at her family's coffee shop, making drinks for customers and raising awareness. She also loves to create, art in particular. One staple of people with Kabuki syndrome is that they have an exceptionally happy disposition. Others love to be around them, and often describe their laughter and joy as being infectious.

As is the case with many rare diseases, families are the ultimate advocates and sometimes one of the only advocates for their loved one. There is a collective wisdom and experience present in the rare disease community that is not available anywhere else. And one important and emerging way that this wisdom can be shared and tapped into is through the internet and social media platforms. For us, in our journey with our daughter Grace, the ability to connect with other parents on a Kabuki syndrome parent group on Facebook was not just a wonderful space for support, it also allowed us to crowdsource vital information about symptoms our daughter was experiencing, as well as other people's experiences. We often took the information we received there and presented it to our medical team, often improving understanding and subsequently care. However, when Rene King and her husband received their diagnosis for their daughter, there were no social media groups for them to connect to.

Rene King  14:49 
I think 2010 is about the time I joined Facebook and then I started meeting, you know, a couple parents at a time.

Derren Raser  14:58 
As she continued to connect with me people online, she saw that there were many families struggling - with finances, with maintaining mental health amidst caregiving, and also struggling to find resources to help explain Kabuki syndrome to friends and family and to the medical teams caring for their loved one.

Rene King  15:16 
It kind of makes me sad. I just sat there, I thought this should not be happening.

Derren Raser  15:21 
After Rene organized a fundraiser for a Kabuki family struggling to purchase Christmas presents for their children, she realized that this community needed something more. So, she and her husband made a big decision. They filed paperwork with the government and officially formed a nonprofit organization, which they named All Things Kabuki, which was the first and only patient advocacy group in the United States focused on Kabuki syndrome. Soon after, she created a Facebook group for parents of children with Kabuki syndrome. The group now connects hundreds of families across the globe and it's become an essential network for this community, and a hub for support,  sharing and information.

Rene King  16:00 
Facebook I think has opened the doors and allowed people into our life and us into other people's lives like never before. I think sharing our journeys, even though they're sometimes complicated, helps us

Derren Raser  16:15 
All Things Kabuki now supports families and raises awareness by providing extensive information about Kabuki syndrome, a database of current research, a birthday card club, a mentorship program, and many other important resources. Rene also travels the country with her husband and daughter Rikki, meeting with lawmakers, consulting with doctors, connecting with families and advocating for greater awareness. She also helps organize a yearly conference in Cleveland, Ohio that brings together individuals with Kabuki and their families, as well as doctors and researchers to share about current research initiatives, treatment breakthroughs, and most importantly, to spend time together in community. The work she's done for this community is remarkable, but it also comes with a cost.

Rene King  17:02 
We did this Christmas program, to this awareness stuff, to this nonprofit, and I haven't stopped. It did give me an opportunity to breathe.

Derren Raser  17:10 
Being such a prominent advocate that so many people rely on can be exhausting. But, the tangible impact her work with All Things Kabuki has been making on families is what keeps her going.

Rene King  17:22 
Our community I think changes all of that. It's the kids that I think about and the parents that don't have the ability to get out and advocate, or aren't ready to, but want people to understand - and that's kind of the drive to not give up.

Derren Raser  17:40 
I asked her if she has any advice for parents who might be just starting this journey with Kabuki syndrome.

Rene King  17:45 
Don't go it alone. That's the biggest thing. Know you're not on this journey by yourself, like I felt like I was for years.

Derren Raser  17:53 
One reason this type of support and connection is so important is because raising a child with a rare disease can be terribly isolating, and can change your life in almost every way. Another reason this Facebook group is important, in particular, is because families often come here to solicit feedback as they troubleshoot their loved one's strange symptoms - symptoms, which medical teams sometimes don't expect or understand. Unfortunately, this also seems to be another staple of Kabuki syndrome. We started learning this from almost the moment that our daughter Grace arrived. Along with more straightforward diagnoses, she also routinely experienced symptoms, or episodes, that our medical team struggled to explain. In fact, these mysterious episodes became a well known occurrence among Grace's doctors and care team. As we started interacting more with the online Kabuki community, we started to realize that we weren't alone in this. We realized that medical mysteries, bizarre symptoms, and medical teams' struggle to explain and respond to them were woven into the stories of many individuals with Kabuki. When Boston Children's started their Roya Kabuki Program through the generous donation of a patient's family, they were only seeing a handful of patients. But, as the program has grown, they have started to see a similar pattern as well.

Dr. Olaf Bodamer  19:11 
There's a lot of things that kind of pop up that we see in one patient, which we haven't seen before, even after seeing so many patients. I think that's that's rather the rule than the exception. It's also interesting when you talk to parents outside the clinic encounter, you learn even more about these unusual episodes. And when you talk to patient advocacy groups, for example, you know, you hear a lot about unusual symptoms that one might not expect to observe. I have these conversations with local primary care physicians, they say "oh, we follow this child with Kabuki syndrome. We dismissed it because this cannot be related to Kabuki." And I always challenge them and tell them - well, how would you actually know? Let me ask around in my community and then all of a sudden we have five more children with Kabuki with exactly the same problem. So, I think we have to be absolutely open minded. I always say anything is possible related to Kabuki until proven otherwise.

Derren Raser  20:15 
This underscores some of the challenges of providing holistic care for individuals with Kabuki syndrome. Beyond the medical mysteries and unexpected symptoms, the sheer number of specialties that need to be involved in order to address the wide variety of symptoms that Kabuki syndrome can cause can be daunting to coordinate, even for center like Boston Children's.

Dr. Olaf Bodamer  20:35 
So, I think you have to approach careful Kabuki syndrome using a multidisciplinary approach. There was certainly some skepticism among the subspecialists. "Oh, you know, if we see a child with Kabuki, what are the chances that we see a second child or third child?" So, kind of building that expertise among the subspecialties, at least in Boston, was initially quite an uphill struggle.

Derren Raser  21:04 
As the Roya Kabuki Program has grown, and subspecialists have both gotten on board, and also grown in their expertise in Kabuki syndrome, the program now strives to share that experience with other centers that might have less experience treating these patients.

Dr. Olaf Bodamer  21:17 
If we see a child out of state, where we are not directly involved in day to day care, we would then build up a relationship with that local care team, share the expertise, be available, not only from my standpoint as as the geneticist, but also from a subspecialty standpoint - so that the local immunologist, for example, or the local cardiologist can reach out to our expert, or we call a Kabuki Champion, for additional insight and expertise. More recently, what we have also initiated this so-called "action crit," which is essentially a table, if you like, that lays out the responsibilities for the family, for the local care team and also for the Kabuki Champions at our center.

Derren Raser  22:07 
Scientific nomenclature is such that new discoveries are often named after the discover or after something in that person's or team's particular experience or frame of reference. When it comes to genetic mutations, this phenomenon can lead to names that, to those outside of the rare disease community, can seem abstruce or arcane. I have to admit, when our daughter was diagnosed, and we first heard the term Kabuki syndrome, I felt the same way. At first, I found the name so disorienting that I didn't mention it when telling people about our daughter's diagnosis. Instead, I would spell out the name of her gene mutation, KMT2D, which was probably equally disorienting everyone else. Slowly, I became more comfortable with it. But, I noticed that people often did a double take and would ask me to repeat the name when I'd say it, and a small few would respond with, "oh, like Kabuki theater?" I wonder if this experience of initial disorientation is common across the other rare diseases with names that are unique, but also obscure. I now proudly own the name Kabuki as an emblem of our daughter's uniqueness and of her unique struggles. But, all of this created a desire in me to understand more about this Japanese cultural tradition that has been forever linked to our daughter in our family as the namesake of the small rare disease community. So, I got in touch with Dr. Samuel Leiter, a celebrated author, scholar and expert in Japanese Kabuki theater, now distinguished professor emeritus at Brooklyn College at the City University of New York. He's written over 10 books on Kabuki theater, and I asked him to help illuminate for me the origins and cultural significance of Kabuki. When doctors Niikawa and Kuroki first clinically described this genetic mutation in 1981, and ultimately decided to link it to Kabuki theater, they did so because they thought the physical appearance of these individuals, especially in the eyes, was reminiscent of a style of makeup that is emblematic of Kabuki theater. So, that seemed like a good place to start my quest for understanding, and I asked Dr. Leiter to share a little bit about what is behind the distinctive appearance of these actors.

Dr. Samuel Leiter  24:15 
It's called Kumadori, and it basically means, "painting on the face of shadows." It's essentially an exaggeration of emotional expression. It's particularly associated with the kind of acting that was created in the late 17th century, around 1660s - 1670s. There was a young actor named Ichikawa Danjuro and he created this really exaggerated kind of acting called Aragoto, which means "rough style." And when he played those roles, these rather powerful superhero kind of roles, he created the original versions of these makeups. Usually the eyes are extended, the lips are exaggerated, and this would be the hero - the most exaggerated form of these makeups.

Derren Raser  25:13 
The fact that this exaggerated appearance is often representative of the hero really resonates with me, and I think it would for many other Kabuki parents as well. Our children battle so many challenges in their young lives, all the while regularly exhibiting great fortitude. It makes me smile with equal parts mirth and pride, to imagine our little Grace as the heroine of the story. I also wanted to better understand doctors Niikawa and Kuroki's cultural frame of reference when invoking Kabuki theater in naming their newly recognized genetic syndrome. So, I asked Dr. Leiter about the importance of Kabuki theater in the general Japanese consciousness, he shared that most Japanese would not only have been aware of it, but most likely would also have thought of it with great respect.

Dr. Samuel Leiter  26:00 
The Japanese take pride in it, and the theater is recognized as one of the greatest forms of artistic expression, of theatrical expression in the world.

Derren Raser  26:13 
Knowing this helps me understand that using this name was not just an incidental association, but was invoking a name and an art form that most people in Japanese culture would have held in high regard. Dr. Leiter shared that many of the stars of the Kabuki stage even have what would be an equivalent status in Japan, to many of the biggest rock stars would imagine in Western culture. At the same time, in some ways, the association that doctors Niikawa and Kuroki made with the specific style of makeup only perpetuates a common misunderstanding about Kabuki theater. That is to say, that this exaggerated style of makeup, while striking, is not representative of Kabuki theater as a whole, and is one of only many that is utilized in this art form, and actually represents only a small segment of plays and characters. Dr. Leiter says it would be like assuming that all the Western theater could be characterized by only a few Broadway plays or musicals.

Dr. Samuel Leiter  27:10 
It's not just "A Chorus Line," or "Hamilton." It's Arthur Miller, you know, it's "Awake And Sing!," it could be a melodrama, it could be Shakespeare. So, it's a multiply diverse form of theater that shouldn't be isolated to, you know, "this is Kabuki."

Derren Raser  27:30 
This type of overgeneralization echoes a similar experience in the rare disease community. Often a certain genetic syndrome gets linked to one particular, easily recognizable symptom, while the actual experience for that individual and those caring for them is much more rich, and sometimes complex. For Kabuki syndrome, these children and adults are so much more than the exaggerated physical features that inspired this cursory association with Kabuki theater. The depth of their medical complexity is matched only by the depth of their joy and desire for connection and the vast impact they have on their families and those around them.

Rene King  28:15 
They are happy. There's just something incredible about them that makes you happy, and draws you to them.

Dr. Olaf Bodamer  28:24 
We just love these patients. I mean, they are so outgoing, very social, just fun!

Rene King  28:30 
It's really special. They just kind of create joy in their surroundings.

Derren Raser  28:54 
Our daughter Grace taught me how to be a father. She taught me how to be an advocate. She brought out strengths and interests in me that I didn't even know that I had. She also opened my eyes to others who are different, to a whole community of people who have complex medical journeys, and to those who love them and provide care for them. She showed me that life wasn't as simple as I believed it to be. And also that it is much more rich, beautiful and full of life than I could have expected. Our precious Grace fought so courageously through her complex congenital heart defect, her lung disease, the immune and autoimmune disorders that affected her, and all the other enigmatic health issues that touched some aspect of her experience. All of these things were the result, in some way or form, of that one gene mutation that caused her Kabuki syndrome. And though she fought, when I think of Grace, I think mainly of her smiles, her tenderness, playfulness, her silliness, and especially the ways in which she loved to connect. Ultimately, the effects of Kabuki syndrome on Grace's body proved too much, and we tragically lost her earlier this year. We miss her every single day. And I imagine we will every day that is to come. But, one thing is certain - she has changed us in profound ways. And I hope that her story, and the stories you have heard today, change you as well. Kabuki syndrome is a complex and unique rare disease, but the ways you can help individuals with Kabuki in their families or not. Find someone in your community that has a rare disease, and get to know them. Get to know their family, and find tangible ways to support them. Share this episode with others and do your own research about Kabuki syndrome. Look into All Things Kabuki, and the other organizations I mentioned in this episode, and donate to their advocacy and research efforts. You can make a difference to individuals with Kabuki, and their families, by not only learning more, but by also getting involved. This episode is in support of all individuals with Kabuki syndrome and those who support and love them. And it is dedicated to our precious daughter, Grace Valentine Raser. We love you always sweetie. All of the music included in today's episode are my original compositions, with the exception of the song you're listening to now, "Heart Of Mine" by my friend and amazing artist Erin Bode. Thank you so much for coming on this journey with me today. I'm Derren Raser, and you've been listening to One Rare Heart.