Helping Elizabeth thrive with rare syndrome

Hi!
My name is Elizabeth, and I am four months old. When I was two months old, I started having seizures and had to spend three days in the hospital. I had to get a lot of blood drawn, an EEG for two nights, and an MRI that I had to be put to sleep for (scary!).
I also have torticollis and plagiocephaly, and despite seeing a physical therapist every two weeks and lots of PT with my mom and dad at home I will need a helmet.
Last week my pediatrician sent me to do a swallow study and we found out that I’m not swallowing correctly, and I had to say good-bye to breastfeeding and only get a bottle with thickened formula. But I hate bottles so I refused! I was taken to the hospital again and this time stayed for four nights! That’s when the doctors found I have a high palate, so it’s hard for me to suction on to a nipple. I didn’t like the solid food we tried, and then they found I have a weak throat! Now I have an NG tube. It’s uncomfortable, but at least I’m gaining weight now!
The doctors were very concerned with me so I had to do a bunch more test (lots more blood taken :( ), including another EEG and an xray on my hands. Turns out the ends of my fingers are stunted, and I don’t have the tip bones in my pinkies.
The big test they did was the DNA genome sequencing, where we found the reason for my seizures and low tone (still can’t lift my head more than a second, sometimes): I have Mabry Syndrome. It’s extremely rare! The gist is I may have seizures the rest of my life, will most likely have moderate to severe intellectual disabilities, and may never get to walk or talk (among other things). Of course, my goal is to prove everyone wrong! Mom and Dad have set up appointments with three different types of physical therapists, and meetings with genetic counselors and my neurologist to help me get s head start. Our calendar is really full!
Even with insurance, these visits and hospital stays and supplies are expensive. I also need a lot of care, so my mom has had to call out of work a lot (of course, I don’t mind that!) and my dad is a disabled veteran and not allowed to work.
My poor mom also had hyperemesis gravidarium while pregnant with me and had to miss a lot of work plus extra doctors visits and getting IV fluids 3x a week. She’s still paying for those, sorry Mom!

We’re the type to never ask for money, but with so much medical debt and having to miss so much work to make sure Elizabeth is completely cared for and can have the best future possible, I figured it was time.
She is our first and only living child, and we want to do everything we can to give her the best life. There are so many things insurance doesn’t cover, such as the expensive helmet (and subsequent check-up visits), and NG tube medical supplies. Every little bit helps, and if you are unable to donate money we would love some words of encouragement! We’re still trying to wrap our brains around our perfect little rainbow baby having such a rare syndrome! Even before we got the diagnosis she had a lot of doctors appointments- at four months she’s already had more tests/scans/etcetera than I have in my whole life. She’s way tougher than me already!