Vallan Harpole

Age: 2.5
Cognitive Age: 1 year
Therapies: Speech, Occupational and Speech therapies
Schooling: N/A
Siblings: Tristan (7) and Keegan (5)
Parents: Heather and Jeremy Harpole

Kabuki Symptoms: Large eyes, long eyelashes, skeletal abnormalities, loose joints, hypotonia, intellectual disability, prominent ears, feeding issues, dysphagia, hip dysplasia, hearing loss, autistic-like behavior, right aortic arch with vascular ring, heart murmur, GERD, cleft palate, global developmental delay, food aversions, sleeps with eyes open, anxiety, eczema, constipation, sacral dimple, hyperinsulinism, chronic respiratory infections, eczema, amazing memory, happy demeanor

Vallan's Story: Vallan's story starts well before he ever entered this world. His parents, Heather and Jeremy, were very excited to learn they would be having a third child. At first, everything went as it should and nothing was amiss. But around 15 weeks, Heather was at work when she noticed she was bleeding. She went straight to the hospital where she was diagnosed with placenta previa, which is when the placenta lies low in the uterus and partially or completely covers the cervix. Her placenta was also trying to detatch, so she was placed on bed rest for a month. Heather listened to her doctors and stayed home during the allotted time, but when back when she was cleared. 

Upon her return to work, Heather began to have problems with dizziness and nausea. Back to the doctor she went where it was determined that her high blood pressure was on the verge of causing a stroke. Going forward, Heather would spend one week of every month in the hospital where she was watched and monitored closely. Her doctor called in a maternal fetal specialist to assist with her care. Around 32 weeks, Heather was diagnosed with polyhydramnios, or excessive amniotic fluid. That was added to the list of things they monitored in her final weeks as no one was certain why her fluid increased and scans gave them no additional information.

 

At 37 weeks, Heather was having one of her weekly non-stress tests when life got even more crazy! Vallan wasn't moving, no matter what they tried. An ultrasound showed that he had stopped practicing his breathing and his liver and stomach had filled with fluid. The Harpole's were rushed to labor and delivery for an emergency C-section. The extra fluid made the procedure even more difficult and riskier than normal. When Vallan came, he wasn't breathing. Once he stabilized, he was rushed to another hospital, 45 minutes away. He would spend 32 days in the NICU before coming home, NG tube and all.

One week after discharge, Vallan contracted pneumonia. He was admitted back to the hospital for one week, which was the start of a two-year process that ended in over 365 days in a hospital room.

So far, Vallan has had six surgeries. At five months old he had his G-tube placed, but there was a complication with the placement and the Harpole's ended up with an extended hospital stay. Vallan needed a special mushroom-valved tube that is extremely rare, a tube he would keep for a year and a half before his body would tolerate and adjust to a typical G-tube. His second surgery was heart surgery, which took place at 11 months of age. The surgeon would have to enter through Vallan's spine and around his left shoulder blade to remove the vascular ring that was wrapped around his esophagus and trachea. He recovered well from this procedure, spending less than a week in the hospital. A month later he underwent a double procedure: Ear tubes in conjunction with a procedure to create new blood vessels for his undescended right testicle. The ear tubes allowed Vallan to hear again after the fluid blocked the bulk of his hearing for his entire first year of life. In October 2018, he had the procedure to finish the reconstruction on his testicle and in January 2019 he had his cleft palate repaired.

Vallan received his Kabuki diagnosis in September 2018 after whole exome sequencing. He sees many specialties and has an inclusive medical team that works with him on all medical issues. He attends a daily medical daycare where he has an IEP and receives his therapies.

In spite of everything, Heather says, "We are loving our life with our Kabuki kid and wouldn't have it any other way, just that he would be healthy! We don't know how many more surgeries he will need, or exactly what his future will hold medically, but we will be here advocating, encouraging and supporting [him] every step of the way!"

Vallan’s Favorites: "Vallan has such a love for life! He is quite literally our pride and eternal joy! He absolutely loves dinosaurs!! He has an entire collection at only 2 years old and even his nursery is dinosaur themed! We have a very small homestead and he loves the animals... feeding the chickens and pigs make him some of the happiest I have ever seen him. We are finding ways for him to be involved in the farm life and he looks forward to it every single day! He loves to scoot around on the floor because he cant walk yet and he has just recently learned that he can pretty much go anywhere he wants to in the house! He hates having to put in the work for therapy tho and he absolutely refuses to do arm weight bearing even at home! He adores the outdoors and loves when we have family bonfires the most. If everyone is together he is the most content. He loves watching his brothers play sports. Football, basketball, and soccer are his favorite. I could def see him doing some special olympic sports when he is older due to his inability to play actual contact sports. I dont know yet what his dreams will be but I know they will be big! If they are anywhere near as big as his love for life then there is no end to what he will do in this life!"

 

Vallan's Relationship with his siblings: "Vallan's relationship with his older brother Tristan is amazing. Vallan absolutely adores him and loves to be around him. They play well together and Vallan longs to spend as much time with him as he can.

 

Vallan's relationship with Keegan is strained. Keegan has ADHD and can be loud at times. This can make it a little more difficult for Vallan since he doesnt like very loud or random noises. But they do play well together whenever they are both having a good day."

Advice for Kabuki families: "A kabuki diagnosis is not the end!! In fact it is just the beginning!! The beginning of getting to know someone that is literally not like any other soul on the face of this earth... the beginning of an education that you never thought you wanted but turns out you needed... the beginning of a life that you never knew existed but turns out it quite worth living for!!! Never forget that you were chosen for this path and even though not everyone will understand and not everyone will even really care, you are special and important! You and the one you love who has now been given this diagnosis now share a relationship no one else has ever or will ever have... and that my friend makes you AMAZING!!!!!"

Advice for parents of “typical” children: "Raising a child that is different, whether it be from kabuki or something else, is always unique to that family. Raising vallan is my absolute joy even on the hard days. A few things that I think would be most helpful in having the world know is that we are  quite aware that he looks different but doesnt seem "sick". We know that he is small for his age. And we also know that even though he seems cute and cuddly, when he pulls away from your advancement for affection it can hurt your feelings. Sometimes I wish i could a disclaimer billboard over his head that reads as follows:

 

Hello! I am Vallan and I have Kabuki Syndrome! In short this basically means a few things:

1. I am very suceptible to sickness so if you are sick, have been sick, or even been around someone who is or has been sick, please dont touch or even come near me! What appears as a cold to you could literally take my innocent life away!

 

2. I know that I am one of the cutest things you have ever seen, but i dont always like to be touched! Please ask my mom and dad if I am having a good day or bad day! If its a good day then wave at me first, if i wave back then you can touch me. If not please dont try because it could make me very upset! If it is a bad day dont even speak to me, address mom and dad and they will ease me into the conversation!

3. When you see my tube or realize some of the features are different, please dont stare! Instead simply ask mommy and daddy about it. they love sharing my story and will help you understand me a little bit better!!

 

4. I love life even though some days are harder to live than others! And even though I am different I still want to be happy and have fun! The world for me is not what you are used to but if you want to be a part of my world I would love to let you in! Just get to know me first and I promise I can love you with my whole heart!!!

 

5. I dont talk very well. I use sign language most of the time. If you want to ask me a question but dont know how ask my mom and dad. If you want to just tell me something make sure I am paying attention first. I will acknowledge you!! Just becaue I cant speak doesnt mean I dont understand what you are saying to me. I have a very strong intellect and can understand just about anything anyone says directly to me.

 

Its not hard to be around me or to understand me you just have to step outside of your comfort zone and into mine. I promise we can be friends it just may take some time!

How Vallan has impacted the family: "From the moment we found out that we were expecting what would become our Vallan Reid our lives were turned upside down. He changed our family structure not only by adding another precious life, but by showing us that we were missing something! I went from being a working mother to a stay at home/medical mom... we relocated BACK to the south much sooner than we had planned... our other children are learning first hand how to treat and be respectful of people who are a little different than they are!!! We as a family have a literal whole new perspective on life and mortality and what it means to live each day that we are given to the fullest!!!

 

As a parent I thought I knew how I wanted to raise my kids and how I had been called to raise my kids but then we had Vallan and all that changed. Not only did learning to care for him and spending so much time in hospitals change the profession I want to chase after, but it revealed to me that I have such a deeper calling and purpose in this life! I have learned to love in ways I never knew possible, I have found the true meaning of peace beyond all understanding, and I have discovered that there is nothing like the moment I am given with my warrior... I literally treat every moment as if it is my last!!!!"

Heather and Jeremy are raising three incredible boys, all with different gifts and different paths in life. Vallan has a long road ahead of him, but like all Kabuki kids, he also has the power to overcome the odds and prove everyone wrong! He carries the gene for ARVC, or Arrhythmogenic right ventricular cardiomyopathy, which is something that won't affect him until later in life, but is something they have on their list of things to watch. For now, though, Vallan is a very happy 2 year old who thrives on life and makes everyone around him smile!

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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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