Twins with rare, genetic disorder to sing the national anthem at EMCC graduation

Crystal and Candice Sipe
Crystal and Candice Sipe
May 08, 2019

Estrella Mountain Community College students Crystal and Candice Sipe love to sing.

“Singing is something we’ve done forever,” Crystal said. “We love being able to share that with people and see their smiles. Music is very therapeutic. You can be having a bad day or going through something and it can just change you in an instant. You start feeling better and smile. It just brings on feelings and emotions and connections.”

The identical twins, who have been singing since they were 2 years old, were chosen to sing the national anthem during EMCC’s 23rd Annual Commencement Ceremony May 10 at Grand Canyon University. The women auditioned against six others in April and their confidence and charisma set them apart.

“There was a glow about them that enhanced their stage presence,” said Sharon Lind, one of the judges and Administrative Specialist Senior for the Deans of Student Affairs. “There was just something about them that made me like them from their introduction.”

The twins have been singing in front of an audience since they were 4 years old, but this will be their first time performing in an arena.

“This is kind of a big platform for us,” Crystal said. “It’s going to be a new experience.”

While many would be extremely nervous about performing in front of such a colossal crowd, the sisters have so much experience singing in their church and at weddings, conferences, and concerts that they’re just looking forward to it.

“I think it will be great,” Candice said. “I’m excited.”

The two also spent about six years in an acapella group in their late teens and early 20s, an experience they will be able to draw from when singing The Star Spangled Banner sans music.

“We’ll be able to pull back from that experience,” Candice said.

The sisters’ affinity for singing serves them well, both mentally and physically. The twins, who were born in India and adopted when they were 1 year old, have Hermansky-Pudlak syndrome (HPS), a rare, genetic disorder characterized by blood platelet dysfunction, visual impairment, albinism, and pulmonary fibrosis, a disease that occurs when lung tissue becomes damaged and scarred. The thickened, stiff tissue makes it more difficult for the lungs to work properly and as the condition worsens, afflicted individuals become progressively more short of breath.

“It really does affect the lungs in a lot of HPS patients,” Crystal said. “So we do have asthma and restricted lung capacity.”

The siblings know they have a high chance of developing pulmonary fibrosis so they exercise regularly and sing to actively keep their lungs healthy.

“We work out and sing and do everything we can to actively keep our lungs healthy,” Candice said. “Singing definitely strengthens lungs.”

Crystal and Candice are Type 4, the rarest and most severe form of HPS. Only 20 people in the world have been diagnosed with Type 4. Of the nine types of HPS, only Types 1, 2, and 4 are associated with pulmonary fibrosis.

“They’re finding that 1, 2, and 4 cause pulmonary fibrosis 100 percent of the time,” Candice said. 

Much of the twins’ singing career revolves around HPS and their plight to raise awareness about the little-known disease. They recently returned from the HPS Network Conference in New York where they sing annually.

“We attend the conference in New York every year to talk about HPS and get the word out to doctors because this is very rare,” Candice said. “They need to know that people are dying from the pulmonary fibrosis. These patients need a lung transplant.”

Crystal stressed the importance of research because there’s no cure for HPS.

“Our goal is to be ambassadors for the HPS network,” Candice said. “That’s what we’ve been doing and what we’ll continue to do for the rest of our lives.”

Crystal and Candice are completing their first semester at EMCC. They’re attending on a vocational rehab scholarship that covers their tuition, as well as transportation to and from school.

“This was the perfect time to come back,” Candice said. “We’ve already had our ministry of 17, 18 years, so we’ve been able to sing all over the place.”

Their love of singing isn’t the only thing they have in common. They also share the same tastes in clothing, jewelry, hairstyles, and even their field of study. They’re currently taking their general education classes and will major in recreational therapy.

“With being a recreational therapist, we’ll be able to provide music and fitness, which is our other passion, to individuals with special needs and help them reach their goals,” Candice said. “That’s our goal, our desire, our passion, and our mission — to be an uplifting inspiration to the people who we meet in our lives.”

Crystal agreed, adding that music truly has the power to heal.

“Just being able to inspire people, share, make that positive impact in someone’s life, that’s what we’re both about,” she said.

But their music doesn’t just make a positive impact in others’ lives, it inspires them, as well.

“I sing for all the reasons Crystal said — it’s inspiring to others — but if I’m having a bad day, it lifts me up, too,” Candice said. “It just takes you to a different place.”