The 2023 BDSRA Annual Conference

Our RV for the trip

This month was the 2023 BDSRA Annual Family Conference, in the great state of Texas. Specifically, it was in Denton, TX — which is actually about 45 minutes from where we lived in Grapevine prior to moving to MA after Scarlett’s diagnosis. Since Scarlett isn’t great on flights, and Cody has never even been on one, we decided to rent an RV and make the long trek cross-country to the conference! And what an adventure that was!

The kids are ready to ride!

We left on Tuesday, July 11th, stopping at KOA campsites along the way, which were really cool and varied experiences. I quite enjoyed the campfires each night, with us sitting together around a fire, making s’mores, smiles, and memories. We arrived to the hotel in Denton on the evening of Thursday, July 13th, and were able to meet a few folks that evening. Personally, I made the walk over to enjoy some Whataburger, not having had any in almost two years.

The next day, the conference began, and it was awesome to meet so many amazing families and their kids. There’s something inexplicable about being surrounded by families that are going through (roughly) the same thing as you are. There’s no need for explanations with them; they just know already and get it. And everyone is supportive of each other s well. There were no silos of individual families there, but everyone united together, literally looking after each other’s children in unison. We could let our kids run free and know someone had eyes on them, and trust that person knew what to look out for and how to provide comfort and calming if needed. It’s simply unparalleled elsewhere.

The second day was no different, and I particularly enjoyed the Ask a Doc sessions as well as the science-based seminars that provided updates as to progress towards medical research around Batten disease. There was also an advocacy session as well. Another awesome element to the conference is a SIBs group — basically, siblings of Batten-affected children can gather together for some fun activities as well as for emotional support. On that note, there were multiple support sessions for mothers, fathers, and even grandparents to gather together, too.

There were, of course, several hiccups along the way:

  1. A (glass) bottle of one of Scarlett’s twice-a-day medicine fell inside the RV, shattering and spilling her medicine all over the floor of the RV. Unsure of how easy it might be to get more of it in another state, I siphoned as much of it as I could off of the floor, which proved helpful as we did not, in fact, get the medicine until we were on our way heading back home. And even that was a struggle.
  2. When we arrived at the hotel Thursday evening, we were told to hurry to our rooms, as there was an ongoing active shooter situation. Basically, there had been an argument at a nearby grocery store, which resulted in fatal gunfire, and the suspect had fled thereafter. Luckily, things calmed down fairly shortly that same evening.
  3. I had planned to use Saturday the 15th to go visit some old places with Cody around where we used to live. Cody was only two months old when we left Texas, and I thought it’d be fun to take him around to some spots, have a picnic with him, and make some cool memories. Unfortunately, the rental car that we rented locally was not allowed to be rented without a credit card. They wouldn’t take a debit card (or cash), and so we did not get the rental, and so we did not get to visit anywhere around where we used to live — despite being only 45 minutes away.
    But, for what it’s worth, that just gave me some extra time at the conference to attend some more sessions!

The final night’s banquet featured a parade of the affected Batten children, followed by a dance party (which Cody thoroughly enjoyed).

On Sunday, the 16th, we had lunch and packed up to make the long drive back to MA. There was of course the aforementioned issue of Scarlett’s medicine, and so we fell way behind. We actually only got back to our home just last night, on Wednesday, July 19th.

Next year’s conference is in St. Louis, Missouri, which is a whole day closer in driving. I already look forward to seeing folks I met this year there again, but also hope to keep in touch between then and now with the connections we made!

In other news, Scarlett graduated from pre-K at her school this past June. She will be starting Kindergarten at a new school in our town, and we’re thankful that her aides from her current school are making the move alongside her!

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