Growing Fashionista
Having lunch with Mommy and Grandma and just showing them how to accessorize using every day things. See how the green dishtowel can show off my eyes? Note: “Grrrrrrrah!!” means “Don’t I look cute?” and can also mean a bunch of other things like “Yes, I’m cute!” and “Aren’t I super cute?” Please let me know if you see anyone else out there wearing dishtowels. It’s happening in Europe right now so it may take a while to take off in the US. Love, Carly-Q Watch Video of...
Read MoreWaterBaby
Did I ever tell you how I got my name? My brothers Grant & Garrett picked the name “Carly” and they won because even when I was 5 days old, my mom and dad could not agree on my name. Daddy wanted Riley or Reagan. Mommy wanted Stella or Clara [my great grandma's name]. Mom said Dad’s names were too new and Dad said Mom’s names were too old. Now, my brothers are really smart, so they picked a name that was kinda old and kinda new! Mom said that since she carried me in her belly, she got to pick the middle name all by herself and she picked “Renee”...
Read MoreGreen beans are yummy!
Green Beans are better than cupcakes for sure. Mom and my mas [Grandma Laine and Grandma Sha] have been telling me that I need to expand my horizons beyond Earths Best volume 1&2 and Gerber babyfoods. [Why? I don't have any teeth! One of the things progeria kids deal with is delayed teeth, so I am S-T-I-L-L waiting, even though it feels like they are going to pop out any second....] Which brings me back to my favorite foods: Earths Best veggies. Any of them except peas. Peas are super gross, just fyi. Spinach, Carrots, Squash, Sweet Potatoes and GREEN BEANS, yum! I also like some...
Read MoreI’m one!
Finally, my birthday came and I am ONE!! So far, June 19th is the best day ever. Now when someone asks me how old I am I will have an answer. I plan to start counting on my fingers soon to show people. Until such time, I will respond with mama or dada. They can tell you that I’m one. So far, I am a big fan of birthdays. Everyone in my family brought me presents! My faves are the ones that make noise. Mom’s eyes cross when I play them all at the same time. As you know crossed eyes means that she likes it, so I try to play them all as much as possible. For my birthday, I...
Read MoreStarting Me on Growth Hormone
Today is the day! Mom and Dad have been talking about starting me on growth hormone. There have only been good results shown in Progeria kids, no negatives. Unfortunately though, it is not proven to help. Mom and Dad are worried that I will be so small that it will be much harder for me to get around, or to reach simple things or to climb tall steps, sit in a normal sized school desk. So, they think we should at least try it. So far, we have not spoken to anyone who has tried growth hormone [with Progeria], but we are hopeful that since I am so young, I will take off like a weed! Also,...
Read MoreHello world! My name is Carly.
Hello world! My name is Carly, but lots of people call me Carly-Q. Or Carlybug. Or Carly Jones Shapiro. [ok, that last one is just my brothers, Garrett and Grant... and they have like 20 nicknames for me.] This is my website – and home for Team Carly-Q. The team is a bunch of cool people who love me and want to get a cure for Progeria as fast as possible! We think it will happen soon because brilliant researchers are working on it around the world and Mom and Dad say that the Progeria Research Foundation is using all that the latest technology has to offer. Plus they are doing...
Read MoreHelp Carly! Donate to PRF.
