Sammie’s Story (Jaclyn’s Version)

Hey, I'm Jaclyn

Hey! I’m Jaclyn. A 31 year-old millennial thriving on Celsius, an upbeat Spotify playlist, and cheetah print everything. Though I do not have Turner syndrome myself, my reason for being here is a pretty freakin’ incredible one.

Meet Sammie

Sam & I met when we were about 7 years old. Her dad and bonus mom, Bob and Michelle, moved in next-door to my family when we were kids. I was shy but wanted to meet her, so I pretended to pick flowers (pretty sure they were weeds) near her house and she came over to introduce herself. We became friends almost instantly – probably bonding over the terrible bowl cuts we both had at that age.

Weekends with Sam

Sam usually only spent weekends with Bob and Michelle, so my time with her was limited. I remember my parents telling me shortly after meeting Sam that she wouldn’t always feel like playing if she was home because she was getting growth hormone injections at the time. Of course, I was so young that I didn’t really understand what that meant or what Sam was going through until years later.

I always looked forward to the weekends and eagerly waited to see Sam and her sister Erica arrive at Bob and Michelle’s on Friday nights. Through the years, we packed as much as humanly possible into our weekends. We were obnoxious and spontaneous together in all the best ways (I mean, if I do say so myself).

Sammie & Turner's

Sammie and I never really had any deep conversations about Turner syndrome (TS), but I wish we had. She dealt with so many health conditions and different medical diagnoses throughout her 26 years of life that were caused by TS. The incredible thing about Sam was that she still prioritized everyone else. At any point when she felt mentally, emotionally and/or physically unwell from TS, she still exerted whatever energy and positivity she had left to love the people and animals close to her.

Sammie made a video a few years back where she spoke about Turner syndrome in detail and all that she endured in her life. Since she handled TS with such grace and strength, so many people never even knew until that point.

Adventures with Sam

Sam and I were friends for almost 20 years. We went through plenty of highs & lows together, drifted apart a little in college, and came back together as young adults to continue our shenanigans together. Whether it was a Degrassi marathon or sneaking out to go to the drive-in theater (with my parents’ futon mattress in the back of Sam’s ford ranger), or ditching our boyfriends to hang out with each other instead, we really were a freakin’ wild duo.

My last days with Sam

Sammie passed away from an aortic aneurysm on May 31st, 2019 and my very last conversation with Sam was May 29th, 2019. There isn’t a day that goes by that I don’t think about Sam and our adventures together. I know down to my bones that I didn’t deserve the incredible friend, soul sister, that Sam was to me and I could never truly put into words how grateful I am for my time with her.

Losing my "Sister"

Grief is strange. Losing Sam was totally surreal and honestly… it still is. We all rallied together over the days and weeks that followed Sam’s passing, just trying to survive what felt like the end of the world. At first I was completely numb and felt nothing; I was empty. But as time passed the grief just came in waves; and as time continues to pass, the waves still hit.

Every year on Sam’s anniversary and her birthday (September 10th, also her dad’s birthday), I spend as much time as I can reflecting on and celebrating Sam’s life and legacy. I’ve learned we are all human and we just have to let ourselves feel and work through our emotions – no matter how difficult.

Be Kind for Sammie

When Sam last addressed her Turner syndrome on social media – she challenged everyone to “Be Kind.” Sam was resilient, she was beautiful inside and out, and she genuinely cared for so many people before she cared about herself – she was ALWAYS kind. Sammie felt the impact of people being unkind to her due to her health struggles and knew the true importance of empathy and kindness.

Every single day we should all be striving to #BeKindforSammie.

For the Butterflies

I know I could never relate to or fully understand what all of you miraculous butterflies endure every single day but I am here to learn, spread awareness, and advocate for you as best as I can. Sammie’s passing was sudden and tragic and it’s so hard for me not to be angry, thinking she could still be here with us.

No one can change the past or what happened to Sam, but I can absolutely channel that emotion and energy to keep her legacy alive and share her story.

I am so excited to join TSF and their mission to advocate and spread awareness for Turner syndrome, and really work toward better health care and outcomes for all of our TS butterflies!

Written by Jaclyn Ely. Edited by Riya Ajmera, TSF Blog Coordinator. Designed by Delvis Rodriguez, Data Management.

Rebekah Kemp

February 19, 2025 at 10:32 pm

Jaclyn, what a heartwarming and beautiful tribute to the butterfly in your life!!!? As a butterfly myself, I’m touched and honored at how you’ve kept Sammie’s memory alive and the respect with which you speak about us TS butterflies ? We’re proud to claim you & are blessed by your support!
(PS – I just so happen to be wearing a T-shirt that just so happens to say “Be Kind” at the moment????)