Hi Everyone! Thanks for listening to my story! I'm hoping to give you an idea of how I ended up here, and what you can do to help. For specific ways to help right now, click here: https://www.gofundme.com/tm6crk-leo-the-lion .
I also have Venmo, Zelle, and GooglePay if that's easier. My email is email@example.com.
I was born on June 4th, 2018 and life was awesome. I met my parents, my brothers, and everybody seemed super cool. My entire family thought every little thing I did was the most amazing thing they'd ever seen. I'd yawn and they'd go "Wow! He just yawned! Isn't God amazing!" I'd poop and they'd say, "There you go little buddy--nice work!". Grandparents, Aunts, Uncles--Everyone would hold me and tell me I was beautiful, precious, and perfect. I've already seen some amazing places like Iowa and Nebraska. Nebraska in particular was super fun to visit. Honestly, I had only been in the family a couple weeks but I was looking forward to being a part of what seems like an amazing group of people.
Then, on Thursday, July 5th, my mom and dad noticed that my breathing seemed rapid. To be honest, I was feeling it too. My dad called the Nurse Line and she told him to call the paramedics. The ambulance came and took me to the ER. Mom joined me in the ambulance and dad/big brothers followed behind. That nurse from the nurse line saved my life because I went into shock on the way to the Hospital. If I didn't get there when I did, I very likely would not have lived through this.
Here's What Happened:
Both my mom and dad happen to have a small error in the same part of their DNA, and they both passed this error on to me. The section of DNA that is messed up is the section that codes for a protein that breaks down ATP outside of the cell into 2 smaller molecules: AMP (adenosine monophosphate) and Pyrophosphate. Pyrophosphates play a big role in regulating the calcium in our bodies. Since I have virtually no pyrophosphates, calcium builds up in my heart and other arteries. This build up put way too much pressure on my heart, and it basically shut down. As mentioned, I nearly died.
I have something called Generalized Arterial Calcification of Infants (GACI).
The crazy part is that GACI is "ultra-rare". In fact, there are less than 200 cases in the medical literature. Statistically, probably 1 in 400,000 babies have this, but many times we don't know because babies frequently don't live long enough to obtain a diagnosis, and babies that pass are thought to have dilated cardiomyopathy which is actually a secondary issue caused by GACI. Frequently GACI goes undetected. I only found out because my parents agreed to partake in a genetics research project being conducted at the hospital.
The sad news is that there is no cure. There is a medication we can try, but as of yet, there is such a small research base, there is no real way to know if this medication has any impact or not. Some bodies resolve the calcium on their own. It seems like if I can hang in there for the next 6 months, then I have a much better chance of sticking around.
Honestly, this sucks. I want to go home and play with my brothers again. I miss them, and I miss being held by my mom and dad. Thanks for taking the time to read about me, I'll keep you posted as things move forward.