Meet Sebastian

Sebastian is a smiley, stubborn, and strong three year old from Houston, Texas where he lives with his parents, Roxy and Daniel, older sister, Lila, and twin brother, Alaric. Sebastian loves the Cars movie, trucks, and sand! This month’s “Every Breath, A Gift” t-shirt design is inspired by Sebastian’s rare medical journey!

We invite you to watch his video, read his story, and subscribe to our podcast to listen to a conversation with his mom & dad.

Roxy and Daniel were enjoying life as a family of three as they gathered with their loved ones to celebrate their daughter Lila’s first year. Following tradition, Lila had a Moana piñata, but instead of smashing it, she began carrying it around like a baby. It was at this moment that the couple decided it might be time to give Lila a sibling, and as a result, she ended up with two.

“Right away, we knew that they were fraternal twins. I think I shed a tear when we found out they were both boys because I knew nothing about raising boys,” Roxy chuckles.

As Roxy’s pregnancy progressed, she was met with praise as her OBGYN told her it was the perfect pregnancy. The only hesitation arose during one of the anatomy scans. Due to insurance, the couple had a different doctor for each scan, yet each time, doctors struggled to get a clear picture of ‘Baby B’ because he was tucked in the back.

On November 13, 2019, the day came for Roxy’s scheduled C-section and the couple was excited to meet their sons whom they would name Alaric and Sebastain. Alaric came just fine, but when Sebastian came, he was a little muffled and less reactive. Immediately, the hospital staff took him back to the NICU.

“This time is a complete blur. I was completely out of it and my husband really took the lead to follow-up on Sebastian’s care. He ended up being transferred from our local hospital to the Houston Medical Center. When we received a call from the doctors, I knew the conversation was important but I kept dozing off,” Roxy explains.

During this call, the couple learned that Sebastian had VACTERL, also known as tracheomalacia, which causes an abnormal connection between the esophagus and trachea. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features.

At eight days old, Sebastian had his first surgery to fix the connection between his esophagus and trachea. He was tube-fed and had to be in his NICU bed for two weeks and not move. Reflecting on this time, Roxy shares,
“He was sedated so he wouldn’t move. Everytime we thought there was progress, there were complications. It was a stressful time; I found myself hiding behind my husband every time a doctor checked on him out of fear that they’d find new information. I didn’t get to hold him for three weeks. That was a huge moment.”

During the same time, Sebastian received his ostomy, and after a month of being in the NICU, the family finally reunited as a whole at home.
As the couple settled into their new normal, Sebastian grew and became a very alert baby.
In March 2020, the twins had reached their five month mark. Things had been going smoothly until Sebastian started coughing up a lot of phlegm and struggled to keep his milk down. He ended up being hospitalized and while this was in the heat of COVID spreading, everything concerning Sebastian’s health seemed unknown.
“This was before the rapid tests were developed. We had to wear masks and gloves the whole time while in the hospital. The conditions were really uncomfortable as his room was more like a plastic dungeon. Luckily, he had rhinovirus, but a basic cold presented itself much differently in Sebastian,” Roxy explains.

Sebastian ended up having to be intubated and extubated three times. After being in the hospital with Sebastian for two weeks, the hospital staff encouraged Roxy to go home and rest.

“Since Sebastian was so small, he was given a medication called ‘the Rock’ that basically paralyzed him. Of course, the night I decide to go home and shower, I get a call from the nurse saying that they accidentally snipped his ear-lobe while trying to remove the tubes. The thing that made me the most upset was that he was paralyzed. He couldn’t move or scream. It was an extremely traumatic experience for our family,” Roxy shares.

While COVID was still on the rise, the family spent most of 2020 at home. Thankfully, Sebastian didn’t have any more hospitalizations that year.

As 2021 rolled around, the family started inch-ing out from under their rock. Sebastian got rhinovirus again and spent another two weeks in the hospital. As Roxy shared, this seemed to be the pattern every couple of months. Sebastian ended up being hospitalized four times that year.

As the new year came around, Roxy started getting back into old routines and was excited to make toddler-friendly recipes for the kids.
“The twins were just over a year old and Sebastian had been eating solid foods for months. It took a while for Sebastian to get to this point because with his surgery, doctors noticed that the top of his trachea would close off, causing food to go into his lungs. On this particular night, I made penne pasta, cut it in half, but still, Sebastian started choking. I was patting his back trying to help him, but it made the situation worse. His whole body stiffened and he turned purple. His dad did mouth-to-mouth and finally, he started breathing, but it was really shaky. Luckily, the ambulance arrived quickly and we went to the OR,” Roxy recalls.

Sebastian ended up spending the next three weeks in the hospital. He had aspirated a bunch of pasta in his lungs due to his laryngeal cleft. From there, the family started thickening all his liquids and stuck to purees.

In the summer of 2022, Sebastian received his g-tube to help with his nutrition. The following fall, the family started going to the Houston Children’s Hospital. Up till then, Sebastian had only been seeing an ENT specialist.
Reflecting on this time, Roxy shares,
“Nobody gave us any information regarding specialists. Things immediately changed for the better when we switched hospitals. The resources we never had, we now had. Over the years, we have learned a lot and have been given things to help keep Sebastian home. Home oxygen, cough assist and suction have been a lifesaver.”

Throughout 2022, the family was met with more health-concerns and Sebastian ended up being hospitalized nine times that year.
Today, Sebastian is three years old and is known as being a smiley, strong and stubborn little guy. He loves playing in the sand, watching Cars, and all things trucks.

“I laugh because Sebastian is a true Becker. His sense of humor is like his dad’s side of the family. He’s silly and spunky, and loves talking about how strong he is. He calls himself a big boy and is the first one to thank us for anything. Very appreciative. When we’re in the hospital, you can tell we’re going home soon because he starts waking up with a smile and goofs around with the nurses,” Roxy shares.
An average good day with Sebastian’s routine consists of using the nebulizer, vest and inhaler twice a day and then an allergy pill before bedtime. If Sebastian is under the weather, this routine goes from twice a day to every four hours. He continues to get his liquids thickened and gets fed through his g-tube for night feeds as just breathing burns so many calories.

While raising three children is not an easy task, Roxy and Daniel are intentional about making sure that each child knows that they are seen and loved.

“Sebastian and Alaric have that typical twin-bond and get along 85% of the time. Since Sebastian spends a lot of his time alone while hospitalized, he has learned to go to the beat of his own drum. Big sis can usually boss Alaric around, but Sebastian usually challenges Lila’s orders,” Roxy smirks

Time to get loud shouters!

Throughout the month of July we will be shouting loud for Sebastian!

So click here to shop now where every purchase in July will go toward the purchase of a portable oxygen concentrator and private swim lessons for Sebastian.

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Every purchase in July will go toward the purchase of a portable oxygen concentrator and private swim lessons for Sebastian.