Tyval battles rare gastroenterological condition with the help of his Mary Bridge Children’s care team

Like most 4 year olds, Tyval “Ty” Jackson has an infinite amount of energy. He likes to breakdance, run through obstacle courses and play make-believe.

One of his favorite roles to play is “Assistant Nurse in Training.” During his visits to Mary Bridge Children’s Hospital or Outpatient Center, Ty helps his nurses with tasks like taking his vitals.

“The staff at Mary Bridge Children’s have incredible compassion for kiddos,” Tyval’s mom, Brandy, says. “Child Life Services made him his own nurse’s badge so he could scan his own hospital bracelet. He scans all his meds in, helps take his vitals, his temperature, does his blood pressure. He does everything, and I think that is so huge to give him control over something. Because for a long time, he’s had no control over his body at all.”

Ty began his journey with Mary Bridge Children’s in March 2018 when his parents noticed small amounts of blood in his stool. In the short span of three months, he would endure four emergency department visits, three sedated procedures and even more blood loss, until his final diagnosis of Very Early Onset Inflammatory Bowel Disease (VEO-IBD) just weeks after turning 2.

VEO-IBD occurs mostly in patients 6 years old or younger. It is rare, and different from diseases such as Crohn’s and ulcerative colitis in that it can cause debilitating symptoms that don’t often respond to typical IBD treatment.

Ty’s parents would change his diet, and his symptoms would dissipate for a week or two and then return. This resulted in several hospital stays, scopes, colonoscopies and even a blood and iron transfusion because of low hemoglobin levels caused by his blood loss.

Tyval in hospital

“You could see him changing as the transfusion was happening,” Brandy recalls. “He went from this lethargic kid who didn’t want to do anything back to his true self, bouncing off the walls.”

Child Life Services, a donor-funded program, found ways for Ty to entertain himself while he was at Mary Bridge Children’s. This included “a small tricycle with a balloon on the back that would squeak as he raced it down the halls,” his mom remembers.

“Ty is such a silly, kind and special kid — working with him always brought a smile to my face, even under my mask,” Child Life Specialist Bari Bates says. “Getting Ty ready to take his medicine one day, we helped him play the ‘fart piano’ on my iPad as his response to questions people were asking him, letting us play a silly ‘joke’ on his nurses (who were in on the fun). ‘Are you ready for your medicine, Tyval?’ ‘BRRRRRRRRRRPT. PFFFFFFFFFFFFT.’”

Everyone on the Mary Bridge Children’s, from the Child Life Specialists to the pharmacists, have tried to make Ty’s experience as comfortable as possible.

“We have an amazing pharmacist who came up with Ty’s very own, very specific, flavoring system for his medications and saved it in his notes,” Brandy says. “He said, ‘It was like baking.’ The pharmacist literally tried the combination and tasted it to see if Ty would like it — they are amazing.”

Ty is so resilient and full of smiles it’s easy to forget he’s battled VEO-IBD for three long and grueling years.

“Tyval is such an exuberant human being,” Mary Bridge Children’s Ambulatory Infusion Coordinator Marika Lolley, says. “He brings a smile to everyone’s face when he is in the clinic. His favorite question is ‘Why?’ This is common with children, but Tyval listens to the answer, and you can see him put all the information together. He understands what is happening but is courageous in continuing to come back and being happy to see us. This doesn’t always happen with everyone, and we are so thrilled to be able to be a part of his health journey.”

This diagnosis is something that Ty will have to manage for the rest of his life, but thanks to his gastroenterologist, his nutritionist, his new diet, monthly infusions and his entire Mary Bridge Children’s care team, Ty and his family are hopeful.

“While I wouldn’t wish this awful disease on my worst enemy, we couldn’t have been placed in better hands than those of the Mary Bridge Children’s family,” Brandy says. “Our team is in this with us for the long haul. I trust each member of our ‘MB family’ with my son’s life. We are so grateful for the level of care and compassion we receive each and every time.”

Specialty care and programs like Child Life Services are made possible thanks to community support. You can make a gift to help kids like Tyval thrive at supportmarybridge.org.