Imagine not being able to hold down the food you eat. It’s the reality for a little Borderland girl who’s living with a rare condition. But, a rare procedure using something you would never want to touch could help her stay alive.
Seven-year-old Evalise Romero is all of us when it comes to her favorite food, but it can also mean possible hospitalization.
“As it progressed, and then seeing all this, this is reality,” said Valerie Mendoza, Evalise’s mother. “This is real.”
Evalise’s reality is constant committing and diarrhea due to her short bowel syndrome, a condition where shortened intestines due to a birth defect denies her body of nutrition.
“You feel hopeless,” said Evalise’s mother. “You wish you could take it all.”
Short bowel syndrome affects less than one-percent of every 100,000 births, according to the National Institutes of Health. It’s a true rare condition that’s especially challenging for Borderland physicians like Dr. Aldo Maspons.
“Ideally you’re working in a team that consist of nutritionist, pharmacist, surgeon and the pediatric gastroenterologist,” said Maspons. “And so the most ideal setting would be one that has all those people under one roof. It’s been tough because we have to work in piecemeal fashion.
Evalise is at constant risk of infection, and possibly death. Feeding tubes became both a lifeline and a nemesis.
“She’d pull out her tubes and we’d have to go back to the hospital,” said Fabian Romero, Evalise’s dad. “That was her home, was the hospital.”
A small intestine transplant could solve the problem but with a mortality rate of more than 50-percent, it’s regarded as a last resort. Still, Dr. Maspons isn’t giving up.
First— by enrolling Evalise in a new experimental drug trial. Two — by planning a fecal transplant. That procedure entails inserting a family member’s waste into Evalise’s intestines in hopes it gets rid of her bad bacteria and helps with digestion. It’s a radical approach to short bowel that Dr. Maspons says isn’t well-researched.
“If we don’t approach those two experimental approaches, we’re basically going to pass through with our arms crossed hoping for the best,” said Dr. Maspons. “I think this gives a better fighting chance for thriving.”
“It’s kind of like the light at the end of the tunnel that’s there’s hope,” said Evalise’s dad.
Until then, the plan to manage her condition has helped. Dr. Maspons says physical growth and emotional well-being are also keys to Evalise’s progress. That’s why he recommended her to the Make-A-Wish Foundation.
“To be a mermaid,” said Evalise.
That wish came true with a family trip in the fall of 2016 to Hawaii.
The best part?
“The dolphins!” said Evalise.
As the family waits for a cure, Dr. Maspons says he’s optimistic about Evalise’s future, but said there’s still more work that needs to be done.
“There needs to be more dollars for these types of diseases,” said Dr. Maspons. “A bigger focus on kids who have intestinal issues.”
Evalise’s parents hope the same, but said Evalise, herself, is the biggest hope they’ve got.
“To see her go through so much pain, how can a little person go through it and still be pushing through,” said Evalise’s dad. “She’s inspiring to both of us.”
And if that’s not inspiring enough, Evalise said she wants to become a nurse when she grows up, explaining very clearly exactly why.
“To help people,” she said.
Evalise’s family said they’re thankful for all the help of Dr. Maspons, and are open to any doctors or researchers who may know of any new treatments for Evalise’s condition.
If you think you can help, email email@example.com so NewsChannel Nine’s Linda Ong can put you all in touch.