• it’s common knowledge that I have more than • it’s common knowledge that I have more than enough photos with Dr. Standard – however, I think I now have more selfies with Dr. Herzenberg, world-renowned surgeon and selfie king 👑 

it felt just like old times (Save-A-Limb reunions 🥹) this weekend celebrating Dr. John Herzenberg’s retirement. 

my first core memory with Dr. Herzenberg was the day I had my first surgery at @limblengthmd. He came into pre-op and introduced himself, stating he may be alongside Dr. Standard in the OR as my case was pushed back due to an emergency case. if you know me, you know I don’t do well with last-minute changes. However, when Dr. H came into my preop, I felt nothing but comfort and compassion from him.

for the past 13 years now, despite being ‘standardized,’ Dr. H has been a staple in my life medically, personally, and professionally. He’s done so much for me behind the scenes, and I’ll forever be so grateful for it. and for those who attend the annual @achondroplasiaresearch conferences, you may see him there ☺️

it was so great seeing familiar faces this weekend while honoring the LEGendary Dr. H – reminiscing on memories we made together over the years and making plans to make new ones! 💙

#limblengthening #topdoctors #teamriao #BLDC #BLDC2023 #baltimorelimbdeformitycourse #savealimb #orthopedicsurgery #patientadvocacy #patientadvocate #patientcare #achondroplasia #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia
• 13 years ago today, “never have I ever befor • 13 years ago today, “never have I ever before” was what I knew before @taylorswift capitalized off the month of august, and right before being taken back into the OR at @limblengthmd – on this day 13 years ago, I had never been more sure of the decision I had only made 19 (MY number) days prior on 8/5/10

earlier this month, I attended #tstheerastour on 8/5, 13 years to the very day when I first met Dr. Standard and booked my surgery for 8/24/2010

I’ve been a fan of hers ever since around the time I was 13 years old. so much of her music has resonated with me, but even more so during these past 13 years of my life – especially folklore and, more recently, midnights

I can’t put into words what it felt like when she began playing ‘you’re on your own, kid’ as one of the surprise songs at my show. the bridge alone best describes everything I have felt these past 13 years

I’ve always been transparent, but I also set boundaries for myself. when I decided to share my experience, I did so because I knew had there been someone for me to watch go through this when I was 13 and tell me, “you’ve got no reason to be afraid,” everything probably would’ve been much different…but then again, I probably wouldn’t be making this post 🥹 

there’s so much more I have to say, but instagram only gives so many characters – once I get it all down, I’ll let you know 🤍

for now, HAPPY LEGIVERSARY TO ME! 🦋

#achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #legiversary #patientadvocate #patientadvocacy #onthisday #erastour #august #yoyok
• it’s 8/05 !!!!! and I’m here to see THE he • it’s 8/05 !!!!! and I’m here to see THE headLINE !!!!!!!!!!!!! 💚💛💜❤️🩵🖤🩷🤍🤎💙

it’s also 1️⃣3️⃣ years TO THE DAY that I made the decision that changed everything for me 🥹

@taylorswift @taylornation #TSTheErasTour #LATSTheErasTour / @haimtheband @estehaim @daniellehaim @alanahaim @gayle @grassodrums @killsweetmax / @eliottnicole @gypsymoonshine @jeslynmusic @melanienyema / @paul_sidoti @amosjheller @davidcook88 @mattbillingslea @maxephronbernstein @sheplaysdepiano @smalltown1 / @natalie_lecz @amandabalen @audreydouglass @janravnik @kamnsaunders @karenschuang @kevin_kid_xs @nat_b_peterson @rastapha @sam_mcdub @sydneymosss @tamiyaxlewis @taylorbanks39 @teetime23 @whyleyy 💚💛💜❤️🩵🖤🩷🤍🤎💙
• MY HEART 🩷 MY HIPS 🍑 MY BODY 💪🏻 MY • MY HEART 🩷 MY HIPS 🍑 MY BODY 💪🏻 MY LOVE – it’s health by a THOUSAND tucks ☺️

officially in my 1000 club era ✨ I’m coming up on my @taylorswift year (13 years!!!) of when I had my first lengthening and fell in love with Baltimore 💜 ever since then, I’ve never taken for granted what my body is capable of and I make sure to take care of the broken bones I mended (x3) and for me, that’s @purebarre_baltimore ❤️

#purebarre #purebarrestrong #purebarrebaltimore #lifttoneburn #LTB #athleta #powerofshe #alo #aloyoga #achondroplasia #dwarfism #dwarfismawareness #skeltaldysplasia #limblengthening #patientadvocate #patientadvocacy #taylornation #tstheerastour #swiftie #deathbyathousandcuts
• butterflies + Dr. Ravi + @dietcoke w/ lime = t • butterflies + Dr. Ravi + @dietcoke w/ lime = the best achondroplasia research conference by far 🥹

this past weekend marked the @chandlerproject’s 5th annual @achondroplasiaresearch conference, @pharmachon 🧬

this year, for the first time EVER, six (!!!!!!) companies: @biomarinpharmaceutical, #QEDtherapeutics, #TYRABiosciences, @sanofi, #AscendisPharma, and @pfizerinc were in the same room as patients with #achondroplasia, parents, caregivers, and physicians sharing about their respective product on the market, failed program, new research, potential new program(s), data, and more. As a patient advocate, I feel it’s so important to hear directly from the researchers and lead investigators behind the science, and not through a second party 💜

thank you to my friend, Sivani Gadriaju, PharmD, who shared her journey of living with achondroplasia and becoming a pharmacist – seriously, how fitting for the event, right?!

the inspiration for ‘pharmachon’ actually came to me years ago (literally right after the first one in ’19), but I wanted to wait until I felt the time was right and this year was perfect – and there was still room for the expert physicians 😉
🧬 Dr. Ravi Savarirayan, @murdoch_childrens
👶🏼 Dr. Janet Legare, @uwmadison
🦴 Dr. Shawn C. Standard, @limblengthmd
💉 Dr. Philippe Backeljauw, @cincychildrens

it meant so much to me this year that four patient advocate groups outside of the US traveled all their way to attend 🩵🧡💚💛
🇦🇷 @asociacionaconar
🇪🇸 @fundacionalpe
🇧🇷 @nanismo.brasil
🇨🇴 @pequenaspersonaslatinas_

I love y’all so much and can’t wait to come visit! 🫶🏻

overall, there are so many cherished moments from the event, but the two that have stuck with me the most are a parent of a six-week-old with achondroplasia who came and said this is exactly what they and their spouse were searching and hoping for 💕as for the latter, see poor quality video, but high quality feels at the end 💐

brainstorming for next year starts soon (pants optional…iykyk)

#pharmachon #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #patient #patientadvocacy #patientadvocate
• the raddest dad 🧡 no matter what I do, good • the raddest dad 🧡 no matter what I do, good decisions or bad 🥲 he’s always so proud of me and never lets me forget it 🥹 happy #fathersday !! ***PEACE*** ☮️
• she’s not a regular mom, she’s a cool mom • she’s not a regular mom, she’s a cool mom 💁🏼‍♀️ how many momma’s do you know that are like “yes baby! let’s go girl!!” when you’re like “hey, I want to break my bones” 🤪 and then she immediately starts doing all the research and things 🥰 and two weeks later on 8/5/10 becomes one of your best days together because things are getting real 🥹 and then 13 years later from that very date you’re going to have another ~ best day ~ ever 🩷 Happy Mother’s Day, momma 💐 i love youuu!! 💜

#mothersday #mom #momma #mommasgirl #momsanddaughters #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #patientadvocacy #patientadvocate #caretaker
• Long Live (Legs) (Chandler’s Version) I sai • Long Live (Legs) (Chandler’s Version)

I said remember this moment, in the back of my mind…it was the end of a decade, but the start of an age 🥹

you could say that 10 years ago marked the beginning of my ‘Speak Now’ era as it was my third lengthening and I was 19 years old 💜

my third lengthening is the one I will always remember most. Dr. Standard once told me the same thing…it was a LONG day in OR 19(!!!) – one of the Precice Nails (internal telescoping lengthening rod) had trouble going into my femur and he was fighting with it 😅 but I also knew (pre-operatively) from that moment forward, my life would never be the same. 3’10” to 4’6” (okay, 4’5 and three-quarters) was one thing, but 4’5” to 4’11” was magical 🪄

before lengthening, I felt like I was standing on the sidelines of my own life wanting, waiting, and wishing for that moment and life. I had cynics telling me how absurd it was for me to be so ‘brutally honest’ and ‘unfiltered’ about the choice(s) I had been making about my own life and the decision to share about them. there were so many moments where it truly felt like I was fighting with dragons 🐉

despite all of that, it was the time of my life…crashing through walls (with wheelchair marks at the HP house and my own to prove it) and shining a light on the life I always longed for 🥰

Long live my long(er) legs and the magic that was made ✨

P.S. this is a PSA to let everyone know that when #SpeakNowTaylorsVersion comes out on 7/7, it will be my entire personality 🤗

@taylorswift @taylornation, this is me trying to ask for the secret song (piano) on 8/5 to be Long Live (Taylor’s Version)...which will also be exactly 13 years(!!!) TO. THE. DAY. of when I made the initial decision to undergo limb lengthening (I’d also scream, cry, and throw up if @jackantonoff was a surprise guest) 🍅

#limblengthening #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #precicenail #precice #nuvasive #fixator #externalfixator #taylorspatial #taylorspatialframe #orthopedicsurgery #orthopedics #patientadvocate #patientadovacte #taylorswift #taylorsversion #taylornation #swiftie #longlive #speaknow #speaknowtaylorsversion #tstheerastour #erastour
• starts watching @daisyjonesandthesix and immed • starts watching @daisyjonesandthesix and immediately enters a new hair-a ✨ #obsessed

👩🏻‍🦰: @rachelweaver_styles / @fifthandmanellc

#rachelweaverdoeshair #baltimorehairstylist #kevinmurphy #baltimore #canton #sola #daisyjonesandthesix #auburn #auburnhair #newera #newhair #beforeandafter
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Aug 5, 2018 • LIMB LENGTHENING

One Decision

Today’s post is going to be a little different. I’m not going to recap my week but I am going to share a story. 8 years ago today I made a decision that would forever change my life. (Also, let’s ignore the fact that I didn’t post a recap last week 😂 These last couple of weeks I’ve been finishing up my summer classes and have had other things keeping me way busy.) But hopefully, this post makes up for it 🙂

I remember it so vividly.

To start, my family and I had just spent a long weekend up in Eureka Springs, Arkansas. At this point, surgery was not on the radar what so ever. I didn’t even know who Dr. Standard was. If you’re familiar with Eureka Springs then you know its architecture and pathways. It’s a challenge for anyone. I honestly can’t remember what made me snap but I remember saying to my mom at one point on the trip, “I just need you to make me do it” and she looked at me like “what are you talking you about” and said, “…do what?” I remember just rolling my eyes irritated because she couldn’t read my mind (#lol) and I said, “lengthen my legs!!”

So we decided that when we got home we would call and make an appointment with Dr. Rozbruch at the Hospital for Special Surgery in New York. I met Dr. Rozbruch in 2005 to discuss lengthening and he was amazing. After a while, I sort of stopped talking about limb lengthening but I still had my moments where I would say, “well when I lengthen…”

Then it was like the sun, the earth, and stars all aligned or something like that. The time between my family vacation in Eureka Springs to meeting Dr. Standard and scheduling my surgery all happened in a span of 2 weeks. After we got home from Eureka Springs there was a special on TV that week that briefly mentioned limb lengthening. It was a story of a girl who had a stunted growth in her leg due to previous health complications. After they mentioned Dr. Standard, I said to my mom, “well what about that guy?” So we looked him up and he was at Sinai Hospital where I last saw Dror Paley in 2002. I had seen Dr. Paley a few times before that when he was at Kernan.

We called Sinai the next day and talked to Dr. Standard’s secretary at the time who said his next available appointment was Thursday, August 5, 2010. We went ahead and booked it because any dates after that ran into the school year. After scheduling the appointment she directed us to call Amy at the Hackerman-Patz House. The Hackerman-Patz house was built for patients and their families of the Rubin Institute who needed to stay in Baltimore for long periods of time. Like I mentioned earlier with the stars aligning there was availability at HP (which we didn’t know this at the time but if you know anything about HP is it books up FAST) We booked HP and plane tickets and were off. I remember on the way up there saying to my mom, “what if he want’s to do it the next day?!” I had so many what if’s going through my mind.

When it came to the day of the appointment I remember it all so vividly. We walked over to Sinai from HP and waited in the waiting room, then I had x-rays and they put us in the room. I remember Dr. Standard walking in and introducing himself. He sat with us for so long just answering every single question I had and discussing any concerns.

After the appointment, Marilyn gave us the tour of the hospital. Showed us where physical therapy and pool therapy were, the children’s hospital, and so on.

I remember waiting in the chairs right off the elevator in the RIAO clinic waiting for Barb, Dr. Standard’s secretary at the time, to come out with the surgery schedule. The next available appointment was in September. That broke my heart because I was ready to do it the next day. Then she remembered someone had just canceled their surgery on August 24 there was no pause. Right away, I said, “I’ll take it.” Right there on that Thursday afternoon, I made one decision that gave me a totally different life. I even remember eating the fries in the Sinai Cafeteria that were seasoned with Old Bay while I called my dad, brother, and sister to tell them I finally decided to do it.

It’s still all so surreal to me. I can’t believe it’s been 8 years. Most children with dwarfism begin lengthening around 8 years old. I was 16 when I started. I always wish I had started at a younger age like 8 or 10 but had I done so it would’ve been a totally different experience and a totally different story – there probably wouldn’t even be a story to tell.

I’m glad I finally took the time to sit and write about this moment. There are a lot more details I could have shared that I plan on sharing soon but I hope with today’s post it gives you an insight into how that day went and how I was feeling. Maybe it motivates you to make one decision you’ve been scared to make. Changes are scary, I know. But sometimes we have to just take the leap.

achondroplasia, baltimore, limb lengthening, sinai, Standard, surgery

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