Wow. It has been a minute (or more like 6 months or so) since I’ve actually posted an update here. Life, travel, advocacy, parenting, work, holidays and everything in between has taken up our time and if there’s one thing I know: time with our girls over anything else is time not wasted.
Now that I have a few minutes, I wanted to share an update on Keira. She is officially 3 years old (as of January 9th) and you would never know she was diagnosed with the same disease as her sister, who is enrolled in Hospice. The difference between the two is night and day.
We are always looking at Keira in amazement over one thing or another. If it’s not her ability to run and climb, it’s how advanced she is in communication (she has since moved up a level in school because of it) or her love of make up or her opinions on our attire, or her skills at back seat driving. I wish I could share a video of her every single day because the world (and more particularly the FDA) needs to see what gene therapy for MLD (Metachromatic Leukodystrophy) can do. It’s truly been our miracle.
Just for fun…we asked her the following questions so you could get to know her right now:
1. If you won a million dollars, what would you buy?
A Barbie Lego!
2. How long does it take to get to Italy?
3. What job would you like to do when you grow up?
4. At what age do you become an adult?
5. If you could be a superhero, what superpower would you have?
I can use powers, and I can make ice.
6. What is your favorite animal?
Seahorse and horses.
7. If you could eat one thing for the rest of your life, what would it be?
Mac and cheeeeeeese!
8. What’s your favorite color?
Pink and Orange
9. What does love mean to you?
It means I love you!
10. What’s your favorite movie?
Elsa and Anna
11. Where did you go in Paris?
The Eiffel Tower!
While she is definitely a “three-nager” and quite sassy and independent, we always remind ourselves that even the hard days are miraculous days. Had she not received this treatment, she wouldn’t even be speaking at this point. So even a “No!” Or “I’m not going to!” response is internally met with a bit of joy on our part. We never got these moments with Livvy so we cherish it all; the good, bad and the sassy. 🥰