Your Dad and I were trying to think of the best way to go about this and figured writing you a letter would be an excellent way to write down what’s going on inside our minds. Perhaps one day even, when you’re old enough, you’ll read it and I pray that day you’ll feel the love that was poured into this letter.
Yesterday your mama got a phone call that would forever change our lives. The lady on the phone called to say “Your daughter has Kabuki Syndrome”. You see in the hospital when you were just a few days old they drew your blood to be tested in several different labs across the United States. We had to wait almost an entire month before we got the answer back from those tests. Your mom and dad knew that there was about 50/50 chance you could have this special syndrome, but didn’t want to take our minds there until we really knew. It’s a phone call that no parent wants to hear, their precious little baby has something different about them, something that they can’t fix.
You may wonder what this thing called Kabuki Syndrome is and how you ended up with it…The best way to explain this is starting from the very beginning. We like to explain Kabuki Syndrome as a syndrome that affects each person with it differently. Some may struggle with walking and talking, some may suffer with heart problems or kidney, some may even struggle with high anxiety. The list of things that comes along with Kabuki Syndrome can go on and on. Not many people have heard about this syndrome, in fact not many doctors have even heard of this syndrome. How crazy is that??? Kabuki Syndrome is a syndrome caused by mutation of a gene. There are two genes that can be affected by this and you have the gene KMT2D (formally known as the MLL2 gene). Scarlett, you may or may not know this, but you know someone with the same mutation gene. Your mom has the same gene as you. We don’t know yet the extent of the mutation, but no matter what you will always be loved and supported, just like your mom! She joked with your dad last night that since you look like your dad so much that it was only fitting that she gave you something to tie you and her together. 😉
What does your future look like with Kabuki Syndrome? Well we really don’t have an answer for that. We know you have the finger pads, long lashes and trouble gaining weight (it took you a whole month to get back to birth weight but we finally made it back) all of which are typical for Kabuki Syndrome. Your mom and dad have a big meeting with the doctor and genetics team next week to discuss more in detail about what we need to be on the lookout for. We’ll have to do a bunch of test to rule out heart, kidney a few other possible problems again. The doctors did multiple ultrasounds of your heart, kidneys, and other organs when you were still inside your mommy’s tummy, but now that you are here they want to take a closer look. So far you are a healthy baby and we can’t stop thanking God for our beautiful baby girl!
Now that we got the tough news out of the way there is one thing that we want you to know and that is Kabuki Syndrome will never define you. You can achieve anything you put your mind too, just look at your mom! She always dreamed of getting married one day and having a family of her own. You are in every way her dream come true! She is living proof that with enough hard work and prayer you can achieve anything you put your mind and heart into! All of that to say don’t ever think that because you have Kabuki that you can’t achieve something. It may take you a little bit longer than some kids your age, but that never stopped your mom or your Auntie Bells! We’ll be your #1 cheerleaders in this life and we’ll always have your back no matter what. 😊
We wish that we could magically take this away from you, that we could protect you from all hardships throughout life but we know that we can’t and that’s heartbreaking. But we want you to know you are loved beyond what words can express. You are Scarlett Belle Brownell, you are our daughter first and foremost and there is nothing we would change about you, our sweet baby girl. God created you with a plan and a purpose. God makes no mistakes, You Scarlett were not a mistake. God placed you in a family that would be perfect for you because He knew your parents have such a heart for the Kabuki community and that we would be able to love and nurture you through the good and bad. Having Kabuki Syndrome is not a bad thing by any means. If you only knew the community of people that we have connected with because of your mom’s diagnoses that already loves you. There is so much support and love out there with Kabuki Syndrome families it’s like we’re a part of one big large family. How cool is it that you have hundreds of friends that are just like you! We like to call them your Kabuki sister/brother. They are some of the nicest people We’ve ever meet and We can’t wait to introduce you to them!
Welcome to the Kabuki Syndrome family Scarlett. Always remember we’re so proud of you and the woman you’re going to become. Go change the world Scarlett. We love you so very much!
All our love.
Dad and Mom
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