MVHS Staffer Gets Peer Support On ‘Rare Disease Day’

By CORINNE MESSER

The Progress

Teachers and staff at Moapa Valley High School surprised co-worker and MVHS Office Manager, Heather Larsen, on Tuesday, February 28. Larsen walked into the school library and saw over 40 co-workers wearing matching T-shirts, holding signs, and wearing stickers to show support for her 8-year-old son, Xander.

Xander has a rare disease called Dup15q. Playing on the fact that this disease involves a partial duplication of Chomosomoe 15, the T-shirts playfully read, “Love all my homies with funky 15th chromies.”

“When I opened the doors and saw everyone there, the tears started,” said Larsen. “It means so much to have so much love and support for this little guy. And I can’t believe Dallas (her husband who teaches at the school) was able to keep it a secret, along with the staff!”

Co-worker, Donna Forrester helped to organize the event which was timed perfectly to take place on National Rare Disease Day.
“Heather mentioned to me that she wished more people were aware of Dup15q,” Forrester said. “So we planned this surprise for her to show our support and raise awareness.”

Dup15q syndrome is indeed very rare. Just over 2,000 cases have been diagnosed in the entire world. It is a neurodevelopmental disorder, caused by the partial duplication of Chromosome 15, which confers a strong risk for autism spectrum disorder, epilepsy, and intellectual disability.
Xander was diagnosed with the disorder five years ago when he was age 3. He will always have the mentality of a 2 to 3 year old.

When asked what Xander likes to do, Heather said he loves to run, swim, and give snuggles.
“There’s been a lot of learning and growth for our family every day, Heather said. “He’s taught us about love, and patience, and that worldly things aren’t as important as we used to think they were.”

When asked what she would like people to know about this disease, Heather said, “Be aware of people with disabilities (like Xander’s). Other people’s actions, such as very loud noises, can set them off. Be aware and be kind; not judgmental. And don’t be afraid to ask questions.”

National Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.