Winding up Chris Delesha’s arm is a tattoo of a chemical structure — meaningless to most, but one that changed his family’s life forever.
The tattoo depicts the amino acid tyrosine, which is unable to be metabolized by his 6-year-old daughter, Vivian Delesha, who turns 7 on Oct. 26. Vivian is one of three people in the state of Minnesota diagnosed with the rare genetic disorder tyrosinemia type 1, which affects only about 175-200 people in the United States.
Five days after returning to their Faribault home after Vivian was born in 2017, Chris and Paula Dudley got a call from their doctor about something unusual that showed up in their daughter’s newborn screenings.
They worried Vivian had some form of cancer until a specialist explained Vivian’s condition. They learned that Vivian is, for the most part, unable to have anything with protein.
“It was very terrifying,” Chris said. “I didn’t know what we were going to do. I didn’t know how we were gonna take care of her, because you start looking at just anything and everything that you have in your refrigerator, in your cupboards, and everything has protein in it. You’re like, ‘What do I feed my kid?’”
If left untreated, tyrosine builds up in the liver and eventually requires a liver transplant. Those with the condition typically don’t live more than six months without treatment.
Vivian’s daily regimen includes pills and thermos of juice, rice milk or water mixed with seven packets of powder that acts to supplement her protein intake.
“Anything that has protein in it, she’s not allowed to have, which basically eliminates all meats, all grains, all dairies, all animal byproducts,” Chris said. “So, pretty much everything.”
A company makes special foods for people with tyrosinemia, which are relatively tasteless versions of everyday food. For any food with protein, Vivian is restricted to a two-page menu of the alternative versions.
She can still eat most fruits and vegetables, french and gets a vegan blueberry waffle every morning. Dudley said it wouldn’t be detrimental overnight for her to have a hamburger, but it wouldn’t be great for maintaining her strict diet.
At first, Dudley and Chris tracked everything Vivian ate in a journal, but they’ve since gotten into a rhythm. Although the couple is divorced, they’re still in “constant contact” to ensure Vivian’s levels are stable.
“It took us forever for her to get the formula that she would drink,” Chris said. “Now, it’s being discontinued. We got kind of stockpiled up, gearing up for this discontinuation. But once it’s discontinued, then we have to go back to one of the other things that we’ve tried samples on, and she wouldn’t take. So we don’t know what we’re going to do once that stage comes.”
Even the medications are hit or miss. While they now give Vivian two pills a day, they used to give her four a day. The pills caused crystals to form on her eyes, and now they have to go to the eye doctor to keep an eye out for that.
Minnesota’s state-run insurance covers the cost of all the medical expenses for Vivian, and provides $500 per month for her special diet. The Faribault Public School District even orders special food for Vivian, so she can eat school lunch like all the other kids.
As crazy as it sounds, Vivian is one of the lucky ones.
“Back 10 years ago, nobody really knew it was a thing,” Dudley said. “Back in the day, a lot of the kids who they said died from SIDS (Sudden Infant Death Syndrome), probably had this. It’s really rare, but there’s kids around the world with it. In many countries, they can’t get medication and all this stuff there.”
Finding hope
About a year after Vivian was born, a national organization called the Network of Tyrosinemia Advocates held the first-ever NOTA Experience. Chris, Dudley and their three daughters went to the annual retreat, and have returned every year since.
They don’t take any other vacations throughout the year, but said the retreat is plenty. All they have to cover is any airfare over $500, and the rest is covered by NOTA.
It’s held on a 500-acre resort in New York called Rocking Horse Ranch. There’s a whole weekend full of activities, like horseback riding, rock climbing, boating, swimming at a waterpark, ziplining and more.
Dudley and Chris still remember the first time they met other parents with children who have tyrosinemia.
“It was awesome,” Chris said.
“It was a relief,” Dudley added. “I think I cried a little bit.”
“I think we cried a lot,” Chris joked. “For me, it was more of a cry because how lucky we were. Vivian was found out right away, whereas they’ve lost their kids.”
Chris said the group of families gets bigger every year, and those wanting to help the cause should just donate to NOTA. Dudley said NOTA helps because they can talk to others in the same boat as them.
“They’ve helped us get formula and medication and stuff, when we couldn’t get it,” she said.
Every year, Chris said they’re updated with the latest research on tyrosinemia and even the latest science around genetic engineering. Along the way, they also found out that developmental problems can come as a consequence of not strictly monitoring blood levels.
The oldest attendee with tyrosinemia, who is 24 now, discovered that people with the disorder can’t drink alcohol. The experience was hard for him, but he made it and passed along the knowledge so people like Vivian don’t have to go through it also.
“It’s a great organization,” Chris said. “They’ve really helped us with everything. I don’t know what we would’ve done without it. Honestly, I don’t know how we would’ve ever made it through without the organization.”
More than the research and sharing tips, Chris said the community is what they find most impactful.
“A lot of us fly into the same airport,” Chris said. “When we meet up with the other families at the airport, it’s hugs and ‘How are you doing?’ When we leave, it’s ‘Love you guys. Can’t wait to see you next year.’ We’re family.”
Local News
Comments / 0