Yes, I realize that it’s nearly March already (how crazy is that‽), but today is also Rare Disease Day, so it’s the perfect time for an update!
Let’s quickly recap Scarlett’s 2022 for those that may have not been as close to us (see our older Blogs if you’d like to catch up). Scarlett had a wild start to the year, as she contracted meningitis from one of her infusions she receives every other week for her Batten disease. This process pumps medicine directly into her head via a port that is installed under her skull, so the infection was no bueno as it was so close to the brain. Long story short, she spent over a week in the hospital but emerged and we soldiered on. However, after a miraculous Thanksgiving 2021 that saw her start to walk again, the time spent in a bed for that long basically whooshed away her skills and she hasn’t been able to walk on her own since. That’s how important repetition can be with her skills! On that note, Scarlett has weekly OT, PT, and speech appointments to help maintain her skills.
In April, we celebrated Scarlett’s 5th birthday party! We went big, as not only was it a milestone but her first one with our family around to get together. So we had a bouncy-house, a face-painter, and even a food truck on the premises! The theme was Moana and Scarlett had a great time with a ton of people showing up for her. She even had three of her former daycare teachers from Texas fly up for the party! This girl is loved.
May saw the Scramble for Scarlett golf fundraiser, of which you can see plenty of photos on our Events page. Alongside these events were an outpouring of support from our very small town. It all started with a neighborhood yard sale, which the Moms involved decided to donate a portion of proceeds to Scarlett’s Fund. To signify which houses were participating, one of the Moms (who runs Cody’s daycare) had yard signs created to support “Scarlett’s Tribe” and thus the phrase was born!
From there spiraled into other neighbors wanting their own signs to stick in their yard, just to show support, as well as donations coming in. T-shirts and stickers/decals were made as well. In fact, this site was created to help keep folks up to date as well as facilitate the demand for the aforementioned items. Our local town’s Little League also honored Scarlett at their closing ceremony and, much later in the year, the Police Department made Scarlett the Grand Marshall of the Thanksgiving Day Turkey Run!
Scarlett finished up her school in Harwich in June, saying goodbye to her teachers and friends there. However, she still has playdates with several of them regularly.
Summer was great as well, with Scarlett getting both aquatherapy and therapeutic horseback-riding lessons. These help her with movement, balance, and posture, and these kinds of things are funded by the donations we receive for her as well. I also should mention that she was even invited to participate in a special show in western Massachusetts with the horse she rides!
Scarlett had a great time with wonderful two in-home caretakers over the Summer as well, who made sure her days were filled with fun activities and even helped us with scheduling. In July, Scarlett and Gina attended the National Batten Conference in Cleveland, where new connections were made that last to this day.
Once Fall came, Scarlett started pre-K at a lovely school in our small town. It’s a fully integrated school, where she has myriad friends and classmates who enjoy playing with her and miss her on her Infusion Days.
Winter came, and Scarlett ended up in the hospital for another extended stay in December, this time for contracting the flu, which led to a sinus infection as well. She was not taking any food or drink, which also meant none of the medicine she receives daily, so she had to stay until they saw she was getting better and taking her meds again. It wasn’t as long as the say in February but it was still a harrowing experience.
The holidays then came, where Scarlett was surrounded by family. And just like that, 2022 came to an end, and a new year began!
We thank you all for reading our latest update. As of now, two months into the year, Scarlett is doing well. She’s still doing riding lessons, as well as her OT/PT/Speech. in January, she accompanied me to an event in DC, and in February all four of us spent the better part of a week with some friends (from back in Harwich!) up in New Hampshire.
We’re trying to think up what theme to have for her upcoming birthday party, as well as hoping to put together another fundraising event later this year, as the last event really helped ensure Scarlett could do so many things that are just perfect for her in her condition. And of course we want to keep that going as long as we are able, for her sake.
That wraps it up for now! Make sure to Follow the blog here so you can be notified of any future updates as well.