Author: Justin Andrews

A week ago, we had our first conversation with with coordinator for this program. It’s hard to believe, that today we have been in the program at the hospital for four days. It is unimaginable, that this could happen so fast. I’ve never gotten stuff done so fast. Amazing the mountains you can move, when something is so important to you.

Noah is doing great. His appetite has doubled, he’s gaining weight quickly, and seems to be more alert. Could this really be working? We are so hopeful.

Today we hijacked Noah out of his crib, and moved his IV tree over to the couch so that he could spend some time with us. We watched a show that documented this disease in a couple of other children in the US. It’s called “Something’s Killing Me” season 2 episode 5. A good watch, you can find it on demand. It’s also floating around youtube. Here’s the link: https://youtu.be/PK61NQySjDM

Tomorrow morning, I will be up against one of my biggest tests, I have to leave these two beautiful babies of mine to go to work for a little bit. It is hard, but it is our reality, and I know I am leaving them in the best hands possible. The doctors and nurses here have been amazing.

In to take my place comes Laura (Larissa’s mother), she has been a saint. I don’t even have words to tell you just how good she has been to Noah. That lady is quite literally an Angel. So good with him, and so good to us. Just like Larissa, she dropped everything she had going on to join Noah on this Journey… When we booked her ticket, I asked how long she wanted to come for. I didn’t receive an answer, just a blank stare, with a puzzled look. It became clear. I was only getting her a one way ticket, because she was in this for the long haul.

Speaking of Angels, Larissa’s best friend Georgina, who I like to think of as an additional sister, created a gofundme page. This too was a hard one for me. I have never taken “hand outs”, and have always been too proud to accept help. I explained to Georgina, that it’s the reason I am traveling back and forth, is to support our family in this journey. I also added that “how can we ask other people for money, when we both have brand new cars, a boat, and a beautiful house in the keys?” She replied, with some numbers on just how much this life is going to cost us, and explained that the money is for the baby and his care, and that the boats and cars, are just things, and I will never be able to fully enjoy without a healthy baby. How can I argue with that? I can’t.

https://www.gofundme.com/noahs-hope?utm_source=facebook&utm_medium=social&utm_campaign=fb_co_shareflow_m

This woman right here.

I don’t even know where to begin. I am so proud of her. Her courage. Her bravery. Her strength. She will do anything for this baby. 

Does she have her moments where she breaks down and loses it? Sure. Does she shake it off and go back out and fight? Absolutely.

She is on the front line, she is in the trenches. She is the one fighting the battle. She will be the one living out of a suitcase for the next seven weeks.

Uprooting her entire life, and going where she needs to go for Noah. It doesn’t end. After this it’s likely Chicago every two weeks, for an undetermined amount of time. Was there ever a question? Not a chance, she didn’t even blink an eye. 

Noah is so lucky to have her. She is his strongest advocate, his biggest fan, and his ultimate protector. She will change the world for him, and she will fight this disease to the very end. She won’t give up. 

Today was a big day. Noah received all three sacraments of the Catholic Church. Baptism, first communion, and confirmation. He did great! Tomorrow we get on a plane and head to St. Louis.

Tomorrow Noah starts his clinical trial on a drug called VTS-270. This drug is crucial to Noah’s livelihood. If it can hold off the damage until a cure or better therapy is available, then we have a chance.

I don’t know if we are ready, but we are packed. We have everything we need and two plane tickets in hand.