Gm1 Gangliosidosis Type 2 - Our Experience: Lucas Return Visit to New Jersey

Since our initial visit, Lucas has been doing great. The weeks right after we returned, he tripped multiple times and didn't catch himself and hit his forehead on the ground each time, so that was worrying us. But since then he has been falling over less and has progressed developmentally, hitting his milestones. The only thing that hasn't been as much as it could be is his speech.

I'm not the best at taking pictures, but I've got a few from our trip.

This is a few days before we left. Lucas and Evan are best friends. Lucas loves Evan so much. He loves to stand on his walker and put his pacifier in and out of his mouth. He also likes to give him toys.

Being driven by the driver who took us to Phoenix for our flight. We did a red-eye trip to NJ. Lucas didn't fall asleep the whole drive or at the airport until after the plane took off at 11pm! That is not normal for him! It was also hard for me to sleep on the airplane, so we probably won't do that again, but it was nice having Lucas sleep mostly through the flight. He was very tired at the airport though.

Beautiful AZ sunset on the way

Lucas did a great job in New Jersey for the two days we had follow up. We saw Neurology who said he didn't see any indication to tell us the treatment wasn't effective. Genetics thought he looked great and he heart tests were all good. His blood work showed lower levels of cortisol - they've been low this whole time due to the steroids, but as we are lowering the drugs, they haven't gone up as much as they want. So he is continuing on the steroids longer until his body recovers. Pictured is him doing part of his developmental assessment. He did a good job. One skill he was able to do, which I was surprised by, was put coins in a piggy banks. After a few attempts he got some in, which was fun!

Visited our old parking lot behind the hotel.

Saw a deer!

We hung out at the mall near the airport before our flight.

We decided to visit my sister in North Carolina, who has lived there for 4 years and we hadn't ever been there. Our flight ended up being canceled and after a long time at the airport and it being late at night, I decided to rent a car and just drive there myself from New Jersey. I drove all night in the heavy rain, stopping for just a short while to sleep and then we made it there the next day. It was a long 24 hours, but we were so glad we came.