SM and PSOD Brings Kids with Rare Disease to a Worry-Free Day

March 12, 2020
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SM and PSOD Brings Kids with Rare Disease to a Worry-Free Day

The Philippine Society for Orphan Disorders, Inc., in partnership with SM Cares, joined the celebration of the National Rare Disease Week (February 22 – 28, 2019) and its culmination with the global observance of Rare Disease Day on February 28, by bringing kids with rare disorders to a worry-free day at SM Mall of Asia.

Together with their families, they were brought to fun activities including ice skating, bowling, and dinner that altogether hopes to give children with rare diseases, a memorable mall experience.

"Aside from spreading awareness, we also hope to make the children enjoy the offers of an SM Mall, and give them an experience they will never forget. While they spend the day having a good time, we know that their parents will forever treasure these priceless memories,” said Engr. Bien Mateo, SVP for Mall Operations and Program Director for SM Cares Program on PWD’s. SM Cares has been a partner of PSOD in raising awareness since 2011.

In spite of having disabilities such as Osteogenesis Imperfecta (OI) also known as the Brittle Bones disease, Treacher Collins Syndrome, or Butterfly Syndrome, among others, the children showed incomparable joy and fulfillment.

Maridel Carapatan, mother of Princess Paula who has Moebius syndrome shares, “Ang kanyang disorder ay wala po siyang facial expression. Pero dahil po sa araw na ‘to, ramdam ko bilang ina na naging masaya siya. First time niya kasi mag-ice skating at mag-bowling.” (My daughter has Moebius syndrome which means she is unable to show facial expressions. But because of this day, I felt, as a mother, that she was really happy. It’s her first time to skate and to bowl.)

Meanwhile, Arlene Angeles, mother of Miracle Beatriz who has Treacher Collins syndrome and is seen in most posters of the Rare Disease Celebration in the country, shares her feelings - “Sobrang saya, kasi makita mo yung ngiti at tuwa at excitement. Dahil sa araw na ‘to, dito ko nakita yung saya niya.” (Very happy, because you can see the smile and joy and excitement. Because of this day, I saw her happiness.)

And Premrose Joven, mother of Princess and Christine who both have OI puts it simply, “Kahit mahirap ang sakit, I feel very hopeful”. (Even if the disorder is difficult to bear, I feel very hopeful)

PSOD is a non-profit organization whose mission is to uphold the primary concerns and welfare of individuals with rare disorders in the Philippines by directly addressing, supporting and protecting their health and general well-being.

SM Cares is the Corporate Social Responsibility arm of SM Prime Holdings, Inc. Its advocacies include Programs on Persons with Disabilities, Children and Youth, Women and Breastfeeding Mothers, Environment Sustainability, Senior Citizens, and Overseas Filipino Workers (SM Global Pinoy).

As a responsible integrated property developer, SM ensures that its CSR programs serve as a catalyst for positive change in the communities that it supports. To know more about SM Cares, you may visit www.smcares.com.ph, www.facebook.com/OfficialSMCares or email smcares@smsupermalls.com.

For those interested to know more about the Philippine Society for Orphan Disorders., Inc., you may visit PSOD Facebook page www.facebook.com/psod.org.ph/ and the PSOD website www.psod.org.ph.