At age 2, Treasure Newton was diagnosed with Gaucher disease, a rare metabolic disorder that requires lifelong treatment.
Newswise — In many ways, Treasure Newton is your typical 17-year-old.
She loves hanging out with her friends and family, trying new recipes and doing her makeup. But unlike most teens, she knows exactly what she wants to be when she grows up. She has an entire career plan mapped out, shaped by a lifetime of being a patient in the DanceBlue Kentucky Children’s Hospital Hematology/Oncology Clinic.
In 2008, at the age of 2, Treasure was diagnosed with Gaucher disease, a genetic condition caused by a deficiency of the lysosomal enzyme glucocerebrosidase. Without the enzyme, fatty substances build up in the spleen and liver, enlarging them and interfering with their functions.
The fatty substances also can build up in bone tissue, weakening the bone and increasing the risk of fractures. If the bone marrow is affected, it can interfere with the blood's ability to clot. Untreated, it can lead to disability and shortened lifespan. Treasure visits the clinic every other week for enzyme replacement therapy.
“I know it sounds bad, but I love my nurses so much,” said Treasure. “Other people might not like it, but I love the community that I'm around when I am getting treatment.”
Gaucher is a rare condition; according to the National Organization for Rare Diseases, approximately 6,000 people in the United States have been diagnosed. Treasure is one of the very few patients seen at Kentucky Children’s Hospital. Symptoms include abdominal pain as the spleen and liver distend, skeletal issues as the bones weaken and a decrease in red blood cells which leads to frequent nose bleeds and bruising.
But Treasure doesn’t remember any of that. Her parents noticed the telltale distended abdomen and brought her to the pediatrician. Blood work came back with a low white blood cell count, usually indicative of cancer. Further testing revealed Gaucher; right away, Treasure started enzyme replacement therapy. As long as she can remember, Treasure comes to the clinic twice a month for treatment.
“Since the illness is due to an enzyme insufficiency, it is treated with biweekly enzyme replacement therapy,” said Andrea Haggard, advanced practice provider in the DanceBlue Clinic and member of Treasure’s care team led by hematologist Vlad Radulescu, M.D. “This is an artificial enzyme treatment that is infused to help with the low supply of glucocerebrosidase. This replacement enzyme helps the body break down glucocerebroside, the fatty enzyme that builds up on the cells of patients with Gaucher's disease.”
After 15 years, the visits have become so routine, Treasure can’t imagine life without them. First is the hour-long numbing process. The enzyme is administered through a surgically placed port below her collarbone. As she grew, so did the size of her port – she’s had it replaced three times already. Next comes the enzyme infusion, which can take a couple of hours. Including the pre-infusion check-up and the post-infusion steps, Treasure estimates the whole visit takes about four hours.
“Growing up, I knew something was wrong, but now it’s more of an inconvenience than a tragedy,” said Treasure. “I would miss school or field trips because of it, but it wasn’t like, ‘My life is so hard.’”.
Treasure views her condition with an empathy beyond her years that can only come from a lifetime of clinic visits. She recalls hearing other patients get their treatment in the clinic, their cries coming through the walls as she sat with her medication pump. At first, she downplayed her disease; after all, she wasn’t experiencing the same thing that made those other patients cry. Gradually, as she got older and learned more about her herself, she gave herself permission to acknowledge that what she was experiencing was serious.
“It wasn’t a devastating thing,” she said. “I didn’t feel the pain like I heard from the other kids, so I didn’t think my problem was that bad because I wasn’t going through what they were going through. For the longest time, I thought my problem wasn’t that bad. But growing up, I know we’re all in the hospital, and we’re all in this together.”
So Treasure made a plan — after graduating, she wants to enroll at the University of Kentucky and major in public health. Next will be medical school, with the goal of becoming a pediatric oncologist. She knows she can use her experience to help kids like her navigate difficult treatments.
“Seeing kids in clinic, I really sympathize with them,” she said. “Ever since I was little, I wanted to help them during treatment and recovery. Whenever I would hear them cry, I wanted to be there for them.”
“Watching Treasure grow up in our clinic has been one of the best parts of my job,” said Meiko Welch, a nurse clinician in the DanceBlue Clinic who has been treating Treasure since she was a toddler. “She has blossomed from a sweet little 2-year-old to a smart, kind, and well-mannered senior in high school. The older she's gotten; she has started asking more about her treatment and medical knowledge in general, which is such a wonderful thing to know she has an interest in her care.”
Treasure won’t let a little thing like a chronic disease derail her from her career goals. Even though her biweekly treatments took her out of school for hours at a time, she hasn’t fallen behind in her coursework. In fact, she’s ahead – as a senior at Frederick Douglass High School in Lexington, she participates in a pharmacy technician internship that employs her in the very hospital where she’s spent a lifetime getting treatment. The nurses who watched her grow up are now her colleagues.
“I love seeing Treasure come to her appointment after she gets off work in the pharmacy,” said Welch. “It shows how dedicated she is to her job and to her care, and how wonderful to have her be a part of the UK HealthCare team.”
It might seem like an impossible balancing act — juggling school and work is hard enough without having to manage a chronic condition. But Treasure uses her lengthy infusion appointments to catch up on homework.
“So many of our patients have to miss school, and it’s not just missing content,” said Courtney Emery, school intervention specialist who helps patients like Treasure balance schoolwork with treatment. “You lose that opportunity to develop friendships as well when you're not in school as much. And what's incredible about Treasure is that it's never gotten in the way. When she's at school, she jumps in with her peers. She has friends and is a stellar student. The fact that she misses so frequently – and you would think that would negatively impact a student – Treasure has not allowed it to impact her in any way.”
When Treasure comes to UK as a student, she plans to get involved with DanceBlue, the student-run, 24-hour dance marathon that raises funds to support the clinic. Student volunteers hang out with patients during their lengthy treatments, playing games with them and doing crafts. Treasure can’t wait to support patients the way the volunteers supported her. Her experience as a fellow patient will give her an empathetic edge.
“I relate to the patients in the clinic; I would be getting my own treatments as I’m playing with them,” she said. “It's kind of like I'm their buddy. It's OK. We're going through the same things.”
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