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.
Hello! My name is Jenna Weets and I am a fellow NPC mom to a little boy named Jeg. He will be 6 in one month and we were diagnosed in November of 2017. He has had no disease progression in the last year of receiving VTS IT. This weekend he just competed for the first time in his junior dragster.
We were also one of those families in Something is Killing me. I also was a panelist at the FDA meeting in March. I saw your post in the group and wanted to reach out and tell you how much hope is out there now. There are so many scientists and drug development companies fighting to help our families. The Ara Parseghian Medical Research Fund helps fund so much of the research along with so many other parent advocate groups. People don’t know what to do to help when their loved ones are going through something like this and they want to help and a GoFundMe is a great way for them. And it is a great way to spread awareness about this disease. You guys are doing everything right so far and your little boy is a fighter. One day at a time.
Justin, what an amazing new Dad you are! We are with you guys, not giving up, we will continue to pray and encourage you in any way we can.