Tatum's Tales: Sage

Welcome to Tatum’s Tales

Tatum’s Tales is a special place where we share the beautiful stories of children living with rare genetic diseases, syndromes, and other extraordinary challenges.

Parents submit their child’s story, and in return, I have the joy of photographing their little one during a complimentary mini session. These stories are more than just words — they’re powerful reminders of strength, love, and resilience.

I’d love for you to take a moment to read their stories, leave kind and uplifting comments to show your support, and share them on your Facebook or Instagram so even more people can be touched by these amazing children and their families.

If you’re new here, I invite you to start at the beginning and read Parts 1, 2, and 3 of Tatum’s Tales: https://www.sarahthompsonprice.com/tatums-tales-1/

Meet Sage!

Sage is a triplet!

I first met Cameron and her sisters through a mutual friend who referred them to me for their newborn photos. Over the course of several photo sessions, I gradually learned about each girl’s unique health challenges. Their strength and resilience left a deep impression on me.

I was truly touched when their mom took the time to write out each of the girls’ stories so I could share them here. I’m so excited to finally share their beautiful photos along with their stories.

They are such a sweet, loving family, and I feel honored to tell their story. I hope you’ll take a moment to read Sage’s journey, keep her and her family in your prayers, and share her story with everyone you know.

Sage's Story

Our idea of being normal parents was like most people’s: get married, a few years later have the first baby and eventually 2.5 kids later, all is well and we’re living the American Dream. It goes without saying that many years later, we are absolutely living the American Dream, and then some. It’s just a slightly different version than what we pictured all those years ago.

After five long years of trying to start a family, we finally knew that we were going to be parents. Finally! Here comes our normal. Then we found out that we were having triplets. Okay, so maybe not so normal. As the months went by, we researched, planned and prepped for our little girls’ arrivals. We had no clue what we were doing, what to expect or even what to think.

And then another surprise– Sage, Cameron and Lia entered this world entirely too soon. At 28 weeks gestation, we said hello to another new normal. Our NICU journey was long, and at times, very difficult. Our daughter Sage was the first to be discharged and we could not wait to start our new lives. It was noted during her NICU stay that she had a large tongue, but showed no other symptoms of any type of genetic abnormality or illness. We were told that she would grow into her tongue, but to keep an eye on it as it could affect her breathing and eating.

After a few months and coming to accept that she took longer to feed than either of her sisters, we started questioning why she seemingly still had very little control of her tongue. 40 minutes to drink her bottle, plus an extra 40 minutes to feed her sisters, meant that feeding all three took 1 hour 20 minutes, and they were on an every 3-hour feeding schedule. Imagine the circles we ran in! We constantly heard comments about how funny and cute Sage was as she was always sticking her tongue out at everyone, but we knew. We knew in the back of our minds that no amount of jokes, or even cuteness, could block out the potential diagnosis that this could lead to. Admittedly, after too much googling, we demanded to have her evaluated. Our pediatrician finally agreed and sent us to a geneticist to screen her for a genetic overgrowth disorder called Beckwith Wiedemann Syndrome. BWS is an overgrowth disorder usually present at birth, characterized by an increased risk of childhood cancer and certain congenital features.

BWS kids grow at an exponentially greater rate than typical kids their age. Even scarier, they have a high chance of developing tumors (cancerous and non-cancerous) in the kidneys and liver. Because of this, 1 in 5 children will not survive past age 2.

Upon meeting with the geneticist, she agreed with what everyone else had said. She had the large tongue, but didn’t present any other symptoms of BWS, so she likely did not have it. Regardless, we all agreed to be safe and have her tested. Needless to say, when we received the positive test, we were devastated. This sweet girl had already fought so hard in her short 6-month life and now she had this uphill battle to contend with for the rest of her life.

Once again, we were forced to deal with a new normal. Appointments were rushed over the next few months to check for any tumors already missed. We met countless new doctors and poured through the very limited research that exists for BWS to help give our sweet Sage the best chance at a healthy and fruitful life.

For so many reasons, that first year feels like a giant blur. When she turned 2 and made it through the window of the greatest risk, we let out a small sigh of relief. We continue to go every 6 weeks for labs and every 12 for ultrasounds and doctor check ins. She has learned to control her tongue and has very few complications because of it. Fortunately, her scans have all been clear thus far. We will follow the check up schedule until she turns 10 years old. BWS is a huge part of her, but in no way does it define who she is. She is a thriving 4-year old full of personality and charm, who loves to play dress up, do puzzles and be silly with her sisters. Her normal is full of doctors’ appointments and scans, but in the same way she fought during her time in the NICU, she continues to be the fierce warrior we know she is.

Normal for our family isn’t just doctors’ appointments, it’s never ending medical bills, battling insurance

companies for claims to get paid, researching constantly and being advocates. Most importantly though,our normal is having three amazing girls who have a bond so strong that it far surpasses any bond that

we as their parents, can even fathom. It’s silly stories and songs before bedtime, it’s constant dance

parties, it’s giggles, dress up, games and so, so much love. Sometimes we wish this life didn’t have to be

so complicated, but we truly, wouldn’t trade it for the world.

Sage is just one piece of our story that helped redefine our normal. Her triplet sisters, Cameron and Lia, each have their own health challenges– Lia, diagnosed at 2.5 years old with mild cerebral palsy, and Cameron, diagnosed upon discharge from the NICU with pulmonary stenosis. But each of those realities are their own stories, filled with their own worries and obstacles, but more importantly filled with love and

hope.