Help Miracle Baby Theo

First of all I'd like to start off by saying that this is very difficult for me and I have never asked for this kind of help or felt so desperate in my life...

A Mother's and families worst nightmare is recently being told that he will pass away they just aren't sure when...

My name is Evelyn and I am the Mother of 9 month old baby boy Theo, who is my second Miracle baby.

I noticed that he was making movements that did not look normal for a newborn. As time went on and I researched what he was doing and watching videos I soon realized that he was starting to have seizures. I had gone to the doctors numerous times and had told them that my son was not ok and something was wrong. They kept telling me he looks perfectly healthy and fine and if I am so concerned to take a video for them to see. I could never catch it on video as they were happening so quickly and very frequently.

We ended up in and out of emerge and were admitted into hospital numerous of times as he was declining in his health very quickly. The one night we went into Emerge he ended up having a really bad seizure and I've never seen a nurse scream so loud for doctors to swarm in. I was completely devastated and could not keep myself together. They kept discharging us early as there "weren't enough beds." We kept getting admitted and discharged until they decided to start doing more tests.

They finally confirmed what I thought all along and said he was infact experiencing seizures. But they still couldn't figure out why. He had an MRI done not telling them much. They decided to pull genetics and I was told with confidence that his genetic panel came back with a positive genetic disease called ARX Xlinked Mutation, which is one of the most important genes that controls the brain and other things in the body. While his cells were multiplying at the early stages, his ARX gene mutated and kept copying the bad ones. His test also showed both good and bad genes together in one cell, which is uncommon and they haven't seen it before, calling it Mosaic. His diagnosis is a rare genetic disease that only happens in males. The other name they used do describe what he has is Early Infantile Developmental Epileptic Encephalopathy (causing severe epilepsy and developmental delay).

To this day, they have him trialing different meds which are not working and he now has Infantile Spasms and many other types of seizures. They have also put him on a Keto Diet saying they need to wait at least 6 months to see if this will help. His spasms and seizures are becoming worse with each passing day and he is having at least 20 that we can see along with over 50 to 100 seizures firing off in his brain all the time that we cannot see. They keep giving me different emergency protocols but cannot find exactly what will help as all meds that they feel are safe enough for him, considering how young he started on them (under 1 month old), are failing. I truly feel like he's a guinea pig.

Currently he is delayed by 6 months. His seizures will continue to grow with him and get worse. We had to make another difficult decision to have a GTube put in. There are many expenses that will be coming up as he continues to grow and has other needs.

I struggle daily and cry all the time. I am lost and confused. I am truly heartbroken and devastated. I keep wishing this was all just a dream or that I could at least take it all away from him. I'm not sure how much more pain I can endure and what more I can handle.

I just want answers and to be able to prepare for his future. We have been in and out of the hospital his whole life so far.

I would like to take him out of the Country to see a specialist for his disease and hopefully get some different answers and treatments for him. There are many unexpected expenses that will arise due to his growing needs.

If you can help support my family and our journey we would be eternally grateful.