Rare disease didn’t deter honors grad
Isabel Bueso, 22, will don a cap and gown Saturday evening and cross the stage at Cal State University East Bay to get her diploma, graduating among the top in her class. For Bueso, the milestone will be exceptional, not only for her academic achievement, but also for the fact that doctors did not expect her to survive beyond childhood.
But then, Bueso is used to overcoming obstacles.
At birth, she was diagnosed with a rare genetic disease called mucopolysaccharidosis type VI that affects about 1 in 25,000 babies and can have myriad side effects. Doctors in Guatemala, where she was born, told her parents that she was unlikely to live past age 7.
Yet Bueso thrived — through multiple surgeries, a period of blindness, weekly drug infusions, paralysis that left her unable to walk, and whatever academic challenges her teachers put her up against.
The diploma she will receive when she rolls her wheelchair on the stage at the university’s Concord campus comes with summa cum laude honors.
“I’m so excited, actually,” Bueso said this week. “I was really, really sick, so moments like these are really impactful for me and my family.”
Bueso laughs a lot when she talks, and is open about her obstacles.
“It’s my wish to inspire others and create awareness about rare diseases,” she said.“My attitude, as a person, I like to think of as positive.”
A big break for Bueso came in 2003, when she was 7 and her family moved to the Bay Area from Guatemala City so she could participate in a clinical research trial for a new drug at UCSF Benioff Children’s Hospital Oakland.
Children with MPS IV, or Morquio A syndrome, lack a single specific enzyme to break down a type of carbohydrate. Without that function, the accumulation of carbohydrates in the cells leads to severe skeletal deformities, short stature and joint problems that can limit mobility and life span.
Bueso saw health improvements with the new drug, Naglazyme, an enzyme replacement therapy. But the drug didn’t reverse the damage MPS IV had already done. In 2008, a nerve reconstruction surgery left her paralyzed from the chest down.
“I used to walk before, and then that happened and it completely changed my life,” Bueso said. She had to leave school, and was homeschooled until she could return. She was 13 at the time, in eighth grade, and returning to class was difficult, she said.
“My mom told me, you have two choices,” she said. “Either you’re going to stay in your room and not go out, or you go out in the world and try to live your life.”
Since then, she’s hardly stopped. At Cal State, she majored in sociology with a minor in recreation, and earned honors from the Golden Key International Honour Society and others. She was director of Associated Students, Inc., the campus’ student government and advocacy organization. She brought the annual “Rare Disease Day” to the university, and helped create a Rare Disease Scholarship fund, awarded to students with disabilities.
Bueso pursued another passion: She became a dance instructor. She began dancing in a program that modifies dance moves for people with different disabilities at UCSF Benioff Children’s Hospital in 2013.
“I started to like it more and more, and that’s when a lightbulb clicked, and I remembered I used to like to dance when I was younger,” Bueso said. In February, she got her certification, which allows her to teach others.
Meanwhile, she juggled weekly medical appointments and occasional health scares. Her faith, she said, kept her motivated.
“I don’t remember who said it, but God is not going to give you something you can’t handle,” Bueso said. “When you’re 13 and you’re not walking and you’re like, ‘What’s happening?’ it can be hard, but it helped me mature quickly.”
What’s next, after graduation? Bueso plans to be involved in advocacy for people with disabilities. She’s been to Washington, D.C., twice to advocate for the National MPS Society.
“I want to do what I can to get support for more research,” she said.
After working for a few years, she wants to get a master’s degree.
But in the nearer term, Bueso said, she wants to go to the beach.
“I told my family, I don’t know about you, but I’m ready to go to somewhere warm and relaxing,” she said. “I want a nice break.”