birthday

Livvy’s 6th Birthday Par-Tay

On May 21st, 2024, we hit a milestone we honestly didn’t expect: Livvy turned 6 years old! 

With the average lifespan of a child with late infantile MLD being 6 years of age, it’s a number that’s always in the back of your mind as a parent. But every MLD kiddo is different. Some pass a year after diagnosis, some live to age 12…doctors will never predict this timeline because the disease is so rare, and there’s no way of telling the medical journey each child will take.

Within the past 6 months, she’s declined so much. One day, her oxygen levels would be at 81% and her heart rate at 180…we think “this is it”. Yet the next day, she wakes up smiling. Throwing up one week, seizures the next. It has been a rollercoaster.

I, honestly, did not expect her to make it to her birthday. But I also knew we had to make it a big deal. So despite the “what ifs” rolling through my mind, the planning began.

For the theme…we knew since seeing Taylor Swift’s Eras Tour on Disney+ all three girls have become major Swifties (Taylor Swift is even on Livvy’s eye gaze device so she can request to watch the concert). So, naturally, we asked Livvy…do you want a Taylor Swift birthday?? And she got the BIGGEST smile on her face.

From the invite, outfits, and decor to the cake and party favors, everything was Swiftie themed, and approved by Livvy.

Here’s a glimpse of her special day, along with some links to things I bought, in case you’re planning a Swiftie party of your own!

The invite, and some of the things we bought, to make the day extra special: