Rare moments

CEBU, Philippines - Sometimes, we fail to value and be grateful. We often forget to treasure the gift of life. There are a few who are deprived of the good life who want to experience how it is to live normally like most people do.

Last Sunday, children with rare or orphan diseases, along with their families, were given loot bags and were treated to free rides and video games, snacks and toys at SM City Cebu Storyland, World of Fun and Bibo during a Worry-free Day for children with rare disorders organized by Philippine Society for Orphan Disorders Incorporated.

It was one rare day where these children and their families were given a chance to forget about their worries.

An orphan disorder is a serious chronic disease that is often life-threatening. It affects one in every 20,000 individuals. Can you imagine how it is like to be one of the very few to be unusually stricken by such illness?

Children born with rare or orphan diseases may appear normal at birth, only to develop problems in later life. Most rare or orphan diseases are genetic.

The lives of children with rare disease are constantly in danger due to its high-cost of treatment, lack of sufficient knowledge and understanding, delay and incorrect diagnosis. Optimum care is still elusive due to the scarcity of available medications and health-care facilities equipped to handle these children with special needs. They are rare and few but they too have an equal right to life and a right to access health support. They deserve a chance in life!

Volunteer photographers from Canon and Cebu Digital Photographers captured the rare moments of this special event dubbed Photography with a Difference. The photos will be exhibited at the forth coming photo-exhibit at SM City Cebu entitled Rare Moments @ SM Storyland on August 24 to 30 to create public awareness with the hope that these can generate participation and support from stakeholders and encourage local and foreign donors to donate to cover the treatment and other medical needs to improve and sustain the health condition of children with rare or orphan diseases.

You too can help these kids. Visit Storyland. –Ed.