Courtney's IlluminATion Ball Speech
"I’m Courtney Schmitt, but you can also call me Charlotte’s Mom.
I’d like to tell you a little bit about Charlotte. Charlotte is a beautiful blue eyed, blonde hair, incredibly intelligent, slightly stubborn, yet quite possibly the sweetest 3 year old girl you could ever meet. Charlotte loves princesses and she loves puppies. Charlotte’s favorite word is Why.
Charlotte recently started ballet and tap dance classes and she is loving it. So, when she is not twirling in a tutu and playing dress up, you can find her running through our house with a giant nerf gun and a shield, usually roaring like a dinosaur, and doing EXACTLY what a little sister should be doing - pestering her big brother James. If one day you are lucky enough to meet Charlotte, I sure hope she is willing to give you a hug because another thing that you should know about Charlotte is that she is the BEST hugger.
Most people would say that Charlotte is a very typical little 3 year old girl. But we know that’s not the case. We know that Charlotte is special. We know that Charlotte is rare. You see, there is something that I haven’t told you about Charlotte. Charlotte has A-T.
It was Wednesday, December 13, 2023 when our world came crashing down. What did Ataxia-Telangiectasia even mean? Imagine being told that your perfect little 2 year old girl would eventually lose her ability to walk, to talk, to eat, and that she was 1,000 times more likely to develop cancers than other children. I remember saying through tears “just stop. You can stop now.” But the appointment continued like a nightmare, that’s when we were told that most children with A-T don’t survive past their 20s.
And that’s when we were told that there is no cure.
Talk about being blindsided. Just a few weeks before that Charlotte’s 2nd MRI came back clear, just like her first MRI. We were told that she was wobbly simply because she was a “toe-walker” and that she would “eventually grow out of it”. But now, to be told that she has a condition that we had never heard of and couldn’t even attempt to pronounce. I remember thinking, wait a minute, a genetic condition, so this is my fault.
Those next few weeks and the last 6 months have been quite the rollercoaster ride (and just to be clear, I’m not talking about the fun kind where you get off and want to get right back on again) I’m talking about the kind that feels like a nightmare. We’re trying so hard to soak it all in and enjoy every single moment, but some days it seems impossible. It’s when we think about Charlotte’s future, that’s when it hits the hardest.
When Charlotte was an infant, one of my favorite books to read to her was called ABC What Can She Be. I would go through each page and say things like “oh look Charlotte, you can be an astronaut when you grow up, or maybe a neurosurgeon - that would be fun, or how about a teacher just like mom and dad” and she would just stare at me with those big blue eyes and sometimes giggle, or spit up like babies do. But now that she can talk, do you know what she says she wants to be when she grows up? She says she wants to be a doctor. It’s the cutest thing, She will run to her room to grab her Dr kit and then everyone (even our pets) become her patients. And that, that is when my heart really breaks. I’ve learned that there is actually a term for it. They call it anticipatory grief.
As I was writing this speech and figuring out what to say, I obviously wanted to say thank you. Thank you to the brilliant researchers whose diligent efforts are helping us unravel the many mysteries of A-T. Thank you to the doctors and specialists that continue to share their expertise and commitment to the families impacted by this terrible disease. Thank you to the donors that continue to show their generosity to help us find a cure and to save lives. Thank you to the Biotech and Pharmaceutical companies that are willing to think outside of the box and willing to take a risk. Thank you to the A-T Children’s Project for bringing us together. Thank you ALL for giving us hope.
But then I realized that I could say thank you all night long. I could say thank you a thousand times to each and every person in this room and it simply wouldn’t be enough. I mean honestly, what do you say to a room full of people that could quite possibly hold a piece of the puzzle to help save your daughter's life.
So, I decided to leave you with the best thing that I can give as a mother, as Charlotte’s Mom. I leave you with this - and that’s a promise. With your help, I promise to give Charlotte a wonderful life. A life full of opportunity and adventure and dreams that only come true. I promise to give her every opportunity to be something great and every opportunity to make her life meaningful. I promise to help her become a Doctor - if that’s still what she wants to do. I promise to raise her to be kind, and to care for others, to love and be loved.
So, as Charlotte’s Mom, that is my promise to you."
