DEAR TBCK SYNDROME

FEature by: katie Ireland, mom to TBCK Warrior, Lottie

A few years ago I had a blog and I wrote a couple open letters addressed to things that were a part of our story. I have been holding in the feelings you are about to read for awhile but it’s time this part of our story is told in the same form. So here goes:

Dear TBCK syndrome,

Now that I have known you by name for almost 10 months, it is time I address you. We have known your destruction for 7.5 years. We have seen way too many visits to doctors, specialists, therapists. We have fought battles with insurance because of you and yet we could not name you. It has been like going to the police and telling them something was stolen and that you know the perps behaviors and habits but without a suspects name, you feel hopeless about getting justice. And eventually no one really knows how to help.

You are a sly little bugger, you hid yourself in plain sight inside my daughter for 6 years before we knew your name. And before that you hid yourself in my husband and I, quietly waiting for your other half. The Bonnie to your Clyde. You found the perfect mutation/deletion match and then you chose our daughter. You were stealthy like a ninja, stealing our daughter’s voice, her ability to move freely and independently through her world. You have messed with her brain and her immune system without even showing your true face.

You were like an internet troll destroying our days while disguising yourself as someone else. You gave yourself Twitter handles like myopathy , dystrophy, cerebral palsy and SMA. You were good at staying hidden. #imposter

You gave us some hints about who you were, hints called hypotonia, irregular brain MRIs, global developmental delays, respiratory weakness, and threats of seizures. In November of 2019, you took it up a notch and showed us that with in your power was a pneumonia that led to the ICU and a large seizure that caused respiratory failure.

But those things did not stop us. They made us more determined. We allowed our baby to be poked and prodded and tested in hopes that we would find an answer. I needed a name, I needed to know what I was really up against and how to stop it. It had to start with a name.

You didn’t know that you would come across incredible adversaries that became whistle blowers, the scientists, the doctors, the parents who just knew they could find your identity. And in 2016, You were exposed. And since then close to 90 families finally have your name.

We are coming for you... we are going to fight to make you less powerful, maybe even powerless. There are people far away and even some in our backyard that are working on figuring you out.

But there are many things you have not taken from us. In fact, beyond your desire to destroy you have accidentally created a lot of good. See, the children that find themselves warriors that must carry your name, those children are incredible, resilient, joyful, innocent and lights to all they meet. They have made their parents better people and are teaching their siblings compassion and responsibility and the ability to love ALL people.

They may carry TBCK on their backs but they are NOT you. They are individual incredible people with so much to offer the world.

- a mom