OGDEN, Utah (ABC4) – Treacher Collins Syndrome (TCS) is a rare genetic disorder. You may be familiar with it if you’ve seen the 2017 film Wonder. For one Ogden family, TCS is not something they only see in the movies, it’s something they live with every day. The family of six gets creative to make ends meet and hopes to improve inclusivity within their community by sharing their journey online.
“But still, it’s scary,” Brooke Sandoval told ABC4. “You dream about it. You dream about your kid dying every five seconds. Sorry, I’m going to cry. It’s like the worst thing in life.”
Brooke Sandoval’s 16-month-old son Odysseus, or Ody, was born with TCS and is under 24-hour medical watch at home.
“We’ve had to revive him nine times,” Sandoval stated. “The ambulance and the fire department down the street, on North Street — they know us by heart now. They get here really fast too. They even know the code to my door.”
Ody is a rambunctious 16-month-old boy with the fullest head of dark, silky hair and a fascination with the camera ABC4 used during the interview with his mom. He also loves to play with his three older siblings, as well as his mom’s phone.
Ody spent his first five months in the NICU at Primary Children’s Hospital. At birth, he was just two pounds. Sandoval added: “If you touched his skin, it would come off, so you had to pat his skin like that (she said while lightly tapping her son’s wrist with her fingertips), and I didn’t get to pat him until he was two weeks old.”
Before taking their baby home, Sandoval said she and her husband had to become certified caregivers. December 9 will be the one-year anniversary of bringing the child home. Even to this day, Sandoval said she doesn’t sleep at night. She actively listens to his strained breathing during the night, making sure his breathing remains steady.
“Never in my life did I think I would have to do this, but he’s worth it,” she said. She looked at her son and asked, “Huh, Odys?”
Odysseus uses a tracheostomy tube at all times and needs an oxygen tank at night in order to breathe. He needs round-the-clock care. This became clear during the interview with his mother.
Sandoval stopped in the middle of answering a question, patted her son’s back a few times and asked, “Are you okay?” Small gurgling sounds emanated from her child’s chest. She looked to ABC4 Reporter Kade Garner and said, “Sorry, I have to suction him.” Ody had some mucus in his airway. She explained that if it is allowed to build up, it leads to needing an emergency trach tube replacement. She told ABC4 that this recently happened at a family event. She and her husband had to revive him in front of a packed house.
Sandoval explained that her son doesn’t have the bone structure in his naval cavity in order for doctors to perform a necessary surgery. They will have to wait to see what happens to his bone structure before moving forward with the surgery that will improve his breathing. It could be 10 years before this can happen and the tracheostomy tube can be removed. Even then, they don’t know for sure.
Before Ody was born, Sandoval worked two jobs to help support the family. She can no longer work as she needs to be at home with the baby at all times. Now, when the family has unexpected expenses, she sells homemade Mexican food.
“I just need to hustle because there’s nothing else I can do,” she said. “I give plasma sometimes.”
She uses her Facebook account to announce her sales. This weekend, she is selling ceviche. Recently, she has also been selling whole batches of pozole. She said she worked in the food industry for more than a decade, and even provided ABC4 with a copy of her certificate of completion for a Utah food handler’s license, as well as a copy of her eldest son’s license.
Not only does she use Facebook to promote her food sales, but she has a second account dedicated to Ody’s recovery, surgeries, her family’s journey, to teach the community about Treacher Collins Syndrome, and share a message about positivity and inclusivity. She said if there was just one message people could take away from her family’s journey, it would be: “Just to treat people the same. Probably. I mean, he’s just another kid. Just like other moms are raising kids too. It’s hard no matter what.”
Not only is Brooke Sandoval selling ceviche this weekend to raise some money before Christmas, but her family is also taking homemade chicken noodle soup to the homeless on Sunday evening in downtown Ogden.