It's been a year since Love What Matters reached out and asked to share my story. My thoughts and words from this passage are still the same. However, looking back, there's more I wish I would've included. I talk a lot about the physicality of everything I've been through. If I'm being blunt, ...
MEGA TV, Buena Veda
Growth Awareness Day
Did you know today is Growth Awareness day? This year, The Chandler Project partnered with Ascendis Pharma to invite patients and families of children with achondroplasia to share insights, experiences, and knowledge about children’s growth. Help raise awareness and encourage others to seek ...
In Love with a Couch
So, I got a pink couch and I love it so much that I had to make a post about it. Here's the story – At the beginning of quarantine, I moved and it took me a while to get a couch and last week, during the busiest week I’ve had all year, I finally got it! Given the time and energy it took to get ...
Virtual Achondroplasia Research Conference
Register for the Virtual Achondroplasia Research Conference on Saturday, September 5 at 9 a.m. Eastern Standard Time. The conference agenda is filled with information and resources on the latest research and development surrounding achondroplasia, including surgical treatment ...
7 year Leg-iversary
I can't believe it's been seven years since my second leg lengthening. 🤩 I still have the monkey, can't say the same for the glasses though (they're around somewhere) and the legs are longer. So I guess happy 7 year LEG-iversary to my third? pair of legs 🥳 Dr. Standard told once me he'll never ...
Rare Disease Day on Capitol Hill
Today is #RareDiseaseDay – a day for advocating, not really celebrating IMO. Let’s celebrate our differences by who we are as individuals, not by our diagnosis. Achondroplasia is caused by a genetic mutation of the FGFR3 gene. Times are changing and it’s important to be a voice that supports the ...
Love What Matters
I had the opportunity to share my story with Love What Matters. Full story below :) “I knew the word ‘achondroplasia’ by the time I was able to talk. At 2 years-old I was able to say, ‘I have achondroplasia,’ even though I probably didn’t fully understand what it meant. By the time I was about 4, ...
everyday makeup (2020)
I am by no means a beauty guru or whatever they call themselves, but I do find myself binge-watching "everyday makeup routine" videos from time to time on YouTube or IGTV. It's pretty addicting. So just for the heck of it, I thought I would share the products I wear on the daily. COVERGIRL Clean ...
A Boost of Confidence
I shared a similar comparison on my Facebook page recently, but this one is taken at the same event – nine years apart ~ so not quite the infamous decade challenge. In the first image, I'm in a wheelchair and Dr. Standard is kneeling down. The second image, we're both standing and my head meets his ...
ICLL Patient Story
I get asked a lot about who's my doctor, where did I go for my lengthenings, what was the experience like, and so on...You can check that out by reading my patient story on the International Center for Limb Lengthening website or down below :) ...
Lights, Camera, Action
Last week I was in Baltimore (surprise, surprise) for another appointment with Dr. Standard but this time it was more planned than it was scheduled – if that makes sense...it does to me. Recently, I was approached by a filmmaker to be part of an upcoming documentary that will share my experience ...
