Piper Evans’ parents think she’s pretty special.
Her doctors do, too: 1 in 10 million to be exact.
That’s how many people are affected by Opsoclonus Myoclonus Syndrome, an extremely rare neurological disorder. One of those rare people is 19-months-old Piper.
There is no cure for OMS, but there is a very aggressive treatment plan. Piper will receive monthly infusions of immune globulins and low-dose chemotherapy, daily doses of steroids and numerous therapy sessions, in order to fight the disorder.
This kind of ongoing treatment is very expensive, which is why the PTA groups at Mariners and Andersen elementary schools, where Piper’s parents teach, have come together to help raise funds.
The two groups are hosting a Piper Evans/OMS Awareness Carnival and Family Fun Night this Saturday raise money to help with her continual care. It is also a fundraiser for National Pediatric Myoclonus Center.
The event will be held at Mariners school from 4 to 7 p.m. The fun night of fundraising will feature an OMS information booth, obstacle courses, face painting, photo booth, cake walks, bake sales, TK Burgers, items from Volcum, the Super Game Bus and other fun activities for the whole family.
“The proceeds will be going towards Piper’s medical fund and towards research to help other kids who may contract this syndrome with no cure,” her parents, Matt and Debra Evans, wrote on Piper’s Page blog, www.debramattevans07.blogspot.com.
The blog has documented the Evans’ little girl from her birth on Sept. 1, 2010, and even the baby shower the month before. Family and friends have been able to follow along with photos and updates from Piper’s mom and dad since then, seeing Piper dress up to watch UCLA football games, model for photo shoots, visit Santa and the Easter bunny, celebrate holidays, take trips with the family, make new friends, and every day life.
The first post in January of 2012 came in letter formed and recounted the family’s trip to the CHOC emergency room after Piper started showing some odd signs.
Told from Piper’s perspective, “my beautiful blue eyes bounce around all over the place. We saw my a couple of doctors who didn’t quite know what was going on with me and wanted to check me out a little further. Before they even got a chance to do that, my little body started shaking like my eyes.”
After numerous tests and visits to several different “ologists,” the OMS diagnosis came.
The cause of Piper’s OMS was a Neuroblastoma, a tumor the size of a tennis ball. It was successfully removed in February.
Now, “[Piper’s] immune system is attacking healthy tissues in her nervous system. It affects her vision, her mobility, her dexterity, her speech and even how she eats and sleeps,” according to a press release from Mariner’s PTA.
The blog post have now been documenting Piper’s brave fight against OMS and her treatment.
The PTA groups have taken an active role to help raise funds to support the Evans family and assist in paying the enormous medical costs to treat Piper.
Online donations can be made through the family‘s Shutterfly account at http://debramattevans07.shutterfly.com.
Donations can also be sent to Matt Evans at Mariners Elementary School. Questions can be directed to Mariners Elementary at 949-515-6960.
Visit http://mariners.nmusd.us for more information.
“Piper is an amazing girl who not only beat cancer at 17-months old, but is bravely facing the challenges of living with OMS,” said Jenny Dory, a teacher at Mariners. “The incredible families and businesses in our community are rallying to support Matt, Debra and Piper on this long journey.”