MANILA, Philippines - It is not often that children with rare diseases get a chance to dance on stage.
The door opens for them this year as the Philippine Ballet Theater (PBT) collaborates with the Philippine Society for Orphan Disorder (PSOD) for “The Nutcracker with a Rare Twist.”
Pauline Martinez, 7, who is afflicted with lysosomal storage disorder, a rare metabolic disease, is among those who will perform with other PSOD children at the Cultural Center of the Philippines on Nov. 10 and 11.
“She’s very excited. We are practicing the dance at home,” her mother Jackie said.
PSOD, a non-profit organization, promotes the welfare of children afflicted with lysosomal storage disorder.
PBT said these children will participate in the Christmas story ballet “to create characters, explore acting and participate in an ensemble effort to communicate the story of love and magic.”
“It will be specially staged to support PSOD’s awareness campaign and raise funds for the organization,” a statement at the PSOD website read.
Proceeds of the performance are expected to help the group send patients to hospitals and subsidize various medical examinations, including diagnostic/confirmatory tests of patients, diagnostic tests critical to the periodic monitoring and management of the disease, enzyme replacement therapies and other treatment and purchase of assistive devices to improve patients’ quality of life.