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By University of Iowa Stead Family Children’s Hospital
IOWA CITY, Iowa — Maddox Smith (Coralville, Iowa) is everyone’s best friend. He’s sweet, easygoing, a great big brother, and a true example of bravery.
When Maddox was 5, his parents, Michael and Jennifer, began noticing what looked like birthmarks all over his body.
“We showed them to our family doctor, and she immediately said, ‘No, those are not birthmarks. Those are known as café au lait spots,'” remembers Jennifer. “She turned on the computer in the patient room and immediately pulled up information about neurofibromatosis.”
Neurofibromatosis, or NF, is a rare genetic disorder that causes tumors to grow on nerve cells.
“Everybody with NF is impacted differently,” says Jennifer. “There’s this really long, horrible list of things that could happen. It could be three of them (tumors), or it could be a hundred of them. There’s not a medication or any sort of treatment path. It’s all wait-and-see.”
University of Iowa Stead Family Children’s Hospital is a member of the Children’s Tumor Foundation Neurofibromatosis Clinic Network, and home to Iowa’s only pediatric genetics team. Maddox was referred to a UI Stead Family Children’s Hospital genetics expert who specializes in NF to oversee his care
“It’s a very small network of hospitals. There aren’t many physicians that dedicate their careers to specializing in NF,” says Jennifer. “His NF doctor, Pamela Trapane, is amazing because she knows NF so well and she’s an expert. She has talked to us about when puberty hits for Maddox, that can often be the start of tumor-generating growth and other skin abnormalities.”
When Maddox was almost 8 years old, he also began experiencing frequent, severe headaches.
“They’d be violent headaches. He’d collapse on the floor,” recalls Jennifer. “Several times, he would vomit uncontrollably.”
An MRI revealed a golf ball-sized cavernoma — a life-threatening brain tumor.
“That was scary because it’s a separate genetic malformation that was not related to NF at all. So besides having NF, he has this other rare disorder,” says Michael.
“Most of the time, cavernomas never reach that size, and if they do, people are in their 40s or 50s before they’re ever discovered,” adds Jennifer. “Maddox was yet again not only having some sort of rare situation, but all the twists and turns about it were rare, too.”
The tumor had bled, causing his brain to bleed and swell.
“The neurosurgeons were very clear that they had to remove it. It was life-threatening for Maddox, and if it were to bleed again, it could take his life,” remembers Jennifer.
Maddox underwent surgery to remove the tumor, and has been thriving since. While he’s no longer able to play football — his favorite sport — he serves as an official assistant coach for his brother’s team.
The Smiths are thankful for the team who have cared for their son during difficult times.
“The importance of pediatric specialists is phenomenal,” says Michael. “We’ve got a great team of doctors that work together. It’s all in one place.”
“They’re the world-renowned experts, right here in Iowa City,” adds Jennifer.
Michael and Jennifer are proud of how Maddox has faced his health challenges head-on.
“He was always (saying), ‘I’m going to be brave, Mom and Dad. You be brave, too,'” says Michael. “That’s kind of been our mantra — be brave and we can get through anything.”