She made it through the night. Far from stable but she made it through the night.
Many people have asked what they can do for us right now. And quite frankly, I have no clue. I’ve never navigated anything like this before.
I feel like I am living a nightmare that just keeps getting scarier and scarier. Every now and then I am startled awake, but when I doze off again, the same nightmare just keeps going. But in this case, just in reverse. When I am asleep, things are normal, we are away on vacation. When I am awake, I am terrified and my daughter’s body is failing her.
Being away from home, I feel lost and alone. Even though we have each other, and my family on their way. I know a lot of y’all feel as helpless as I do. Many have tried to send flowers and treats… but because of how critical she is, unfortunately we cannot have anything like that in our room. (And at some point we will have to get it all home.)
So for those who want to do something, here’s what you can do. Lorelei has a fund set up with the Children’s Hospital of Philadelphia. All money in this fund goes directly toward a lab that is doing Mitochondrial Disease research, and specifically her FBXL4 mutation. So every single penny you donate is working to find a cure for Lorelei and her other mito warrior friends.
When and if our family figures out anything we need or anything that will help us in this storm, I will let you know. Considering we are stranded in Orlando, 12 hours from home, I am sure at some point we will need something. But right now, prayers, good vibes and donations to Lorelei’s Fund for a Mito Cure is the best way to help our family.
You can donate and learn more here:chop.donordrive.com/
I will continue to keep everyone posted as much as I can. Thank you again for outpouring love.
PS. New around here and wanna know what the heck mito is? I love this video from the Lily foundation in the UK. It’s a great summary in cartoon form: https://youtu.be/