Like most of us, kids with rare illnesses are rarin' to live life

An obstacle course, art puzzles, horseback riding, and swimming filled a hectic, “worry-free” day of fun in Tagaytay over the weekend for 10 children with rare disorders that upset their growth but not their fighting spirit.

With the zeal the kids showed, they proved that given the chance—and sometimes with very little prodding—children with rare disorders seize the moments to experience whatever life has to offer.

 

Cyrel Naul, a grade four student, has Hunter Syndrome, which afflicts about one in every 100,000 males and renders the body unable to break down sugar molecules needed for vital organs and tissues to function as they should.

 

His mother, Cristy, told GMA News Online, Cyrel was so excited about the Tagaytay excursion that he hardly had any sleep the night before. 

 

Intermittent rains of the Sunday morning over Cavite's highlands did not dampen Cyrel's enthusiasm. He breezed through the Christmas tree art attack game that served as a warm-up activity and then joined the obstacle course by running a part of the relay. That was followed by horseback riding during which he calmly rode the horse assigned to him.

 

 

Most excited he was about swimming, according to his mother. Luckily by past lunchtime, the rain clouds parted and the sun shone through. In minutes Cyrel and the other children guests of Tagaytay Highlands, the SM Committee on Disability Affairs (SM Cares) and Canon were at the pool area.

 

 

Cyrel's mother said he studies well in school but has apprehensions about high school although that is at least two years away still. 

 

“He does not look forward to meeting other kids who will not be nice to him and even bully him just because he is different. Luckily, he will have a teacher who has committed to keep watch and protect him from the bullies,” Cristy said in Filipino.

 

 

For parents like Cristy and husband Ruel, there is a support group, the Philippine Society for Orphan Disorders (PSOD), whose mission is to come to the aid of families coping with rare illnesses like Hunter's Syndrome, Gaucher Disease, Mobius Syndrome, and MPS IV Maroteaux Lamy Syndrome.

 

PSOD president Cynthia Magdaraog shared with GMA News Online that with the advances in medical science, cures are being discovered and developed for the rare diseases. She said the PSOD is able to extend support services to families, including livelihood aid so the financial worries of the families can be eased.

 

 

Photography With a Difference (PWD) project director John Chua told GMA News Online that the worry-free day dubbed Let's Get High—now on its second year—is meant to prove the impact of what a bit of caring from volunteers, companies and organizations can do to create awareness about and opportunities for children with disabilities.

 

Chua said photographers from the Visayas and Mindanao have learned of Let's Get High and PWD and want to form local chapters to support causes involving children with disabilities.

 

Select photos taken during the Tagaytay excursion will be featured in an exhibit that will go on a mall tour in the months ahead. –KG, GMA News