KA Name: Jordan Reinman Brownell
Cognitive Age: N/A
Therapies: PT, Speech
Siblings: Zack (27) and Peter (25)
Kabuki Symptoms: Open sinus in front of left ear, an extra section/fold inside the right ear, big eyes with lower lids turned out, sparse center eyebrows with a high arch, submucous cleft, bifid uvula, hearing loss, loose tendons with hyper-extending joints, patella dislocations, arthritis due to hyper-extension and joint dislocations, high anxiety, precocious puberty, excessive body hair
Jordan’s story is one of hope, love and perseverance. When she was born in the late 80s, Kabuki syndrome was very new. There was almost no research, no genetic testing, and very few doctors even knew what it was. So no diagnosis was given to Jordan until she was 26 years old, and until then, the family was searching for answers.
Her mom’s pregnancy was pretty normal, with some extra amniotic fluid being the only abnormality, but child birth was normal. After she was born, Jordan had a few spells where she turned blue while nursing. No one had discovered the bi-fid uvula or the submucous cleft. They did an upper GI scope, or endoscopy, looking for other abnormalities but did not find any.
Besides the cleft, perhaps the first sign that Jordan would be a Kabuki kid was her recurrent ear infections that required tubes to be placed
when she was two. Her first major operation happened at the age of 6, when her cleft palate was repaired. At the age of 7, she nearly received a Kabuki diagnosis, but because of the lack of information it didn’t stick. The doctors said she was “too high functioning” to actually have it. At that point, the family sort of let everything go until Jordan was 26.
If you know Jordan, or have talked to her even a little, you can tell that she is high functioning. During her school years, public school was hard. She was bullied a lot, until her mom decided to homeschool her beginning in 5th grade. That was when Jordan started to notice that she was different. Not just from her friends, but her brothers too. She often wondered why she was different, and at 13 her anxiety and depression began to show up. The feeling of being alone, that no one was like her, that she didn’t fit in anywhere became a daily struggle that continued into her 20s.
During this time, Jordan suffered her first knee dislocation. At the age of 16, she had her first knee surgery, which unfortunately didn’t take. Doctors tried again when she was 27, but her patella seems to have it’s own desires to not stay in place. This is when the Reinman family began to look for answers. Jordan’s parents suspected Kabuki, but had to jump through hoops and visit “a multitude” of doctors. A year into their search, they finally received the opportunity to be tested for Kabuki, a test which came back positive. Here are Jordan’s words on how she felt when the result came in:
“That moment I found out it was Kabuki syndrome, I was joy filled. I finally had an answer for this question of where I belonged that I had had my entire life. Sadly that joy was short lived because reality set in. Suddenly that joy became a spiral of depression when I realized that Kabuki has no cure. I thought what is the purpose of pressing forward if I can’t be cured? When I hit my lowest of lows I realized that God had a purpose for my life. I had a reason to be on this earth! I decided then and there that I wanted to use this syndrome for God’s glory. I didn’t know what that looked like at the time, but it gave me something to go towards, something to live for.”
A month after her diagnosis, Jordan found that Kabuki Syndrome Group on Facebook. She began blogging, sharing her story, and discovered that this was her purpose. Kabuki Unfiltered, Jordan’s blog, has become a source of hope and inspiration for many (this writer included!). Jordan learned that she is meant to be a support for other Kabuki families, to provide a glimmer of hope that their kids can be more than they imagined.
Getting her Kabuki syndrome diagnosis has changed Jordan’s life. She has found purpose, made lifelong friends, found others like her, and has used her position to better herself physically (100 pound weight loss!) and mentally. She wants to be a role model for other Kabuki kids, and through talking with them, she’s learned that her own goals are attainable. In her words, “Kabuki has given me the understanding that it’s okay to be different, and the strength to acknowledge that.”
Jordan’s Support System: “I have an incredible support network with my husband and my family. 3 years ago I discovered the Facebook support group for Kabuki Syndrome that has been a tremendous support for us. Knowing that families that are working similar journey’s has brought so much relief to myself and so many other families out there. It’s really been my faith, family and that online group that has been my main source of support when I grow weary on this journey.”
Jordan’s Relationship With Her Siblings: Jordan describes her relationship with her brothers as a “wonderful relationship.” Zack and Peter have always been supportive of Jordan and her differences, and have always been understanding and handled the situation with “grace and love.” In Jordan’s words, “I really appreciate them, their friendship and often say I look up to them. They are really the best brothers out there!”
Jordan’s Likes: “My husband and I like to travel and explore new areas, go to Giants baseball games, reading and helping other girls that feel like they don’t fit in to find their passions in life. Two major dreams since I was a child have been to get married and have a child, both of which happened in the last year!”
Advice for Kabuki families: “Never underestimate what your child can achieve. Don’t limit them. Allow them to blossom to their full potential, and be the foundation they need to reach the stars”
Advice for parents of “typical” children: “That Kabuki syndrome is such a journey that can bring out the absolute best in our child, that if only they saw what these wonderful Kabuki kids have conquered in their short lives, they would see the beauty. Don’t be afraid to ask questions. We enjoy educating and helping people understand this syndrome because we are so proud of our children who have it.”
How Jordan has impacted the family: “It was a huge impact on our family because of the fact that I wasn’t diagnosed until I was 26 years old. Until then, we were just searching for answers, and at last we had something tangible to work with. It has been challenging at points, but overall I think it has brought my family closer together.”
***Editor’s note: On August 9, 2017, Jordan gave birth to a baby girl! Mom and baby are home and doing well, please see Jordan’s Facebook page for pictures of her gorgeous baby girl, Scarlett Belle Brownell. Congratulations Jordan and Zackariah!
***Correction: Jordan and Zackariah were married in November 2016, not January 2017. The editor apologizes for the oversight!