This is Butterfly Baby, a documentary film produced by SubSelfie.com author Edma Remillano about the rare Butterfly Disease.
Text by Lian Nami Buan
Jhon Ruiz is five years old. But he looks small. At first glance you would guess maybe he’s two years old. He is also covered from head to toe with wounds. His mother Ayra tries to let him enjoy things that a normal five-year-old would like. Play, go outside, eat at Jollibee — even though those might just kill him if they’re not careful.
It’s precisely because of these things that Ayra decided to call his son “Lucky.” He is lucky to be alive.
Lucky has Epydermolysis Bullosa (EB) or what is commonly known as Butterfly Disease. His skin is as delicate as a butterfly’s wings, which explains Lucky’s state. He has Recessive Dystrophic EB, the most severe form of the disease. Apart from sensitive skin, his throat also injures easily. He can only eat liquid food and the occasional soft treats. This explains why he’s so small.
Butterfly Disease afflicts only one in every 50,000 babies. In the Philippines, according to Lucky’s doctors, there are only around ten cases. Butterfly Disease doesn’t have a cure. Lucky requires a lifetime of medical maintenance and living a most cautious life.
Lucky always has bandages. He is surrounded by electric fans so his skin can breathe. He cannot scratch himself. His mother touches him ever so carefully because one wrong move and it sends them running to the hospital for deep wounds. And when his immune system can no longer take it, he can have critical complications. They’ve learned how to live with high fever, UTI and pneumonia. They have learned how not to panic when Lucky is hit with muscle spasms.
Lucky takes different kinds of vitamins, and uses various creams and ointments. On average, they spend P8,000 a week for his medication alone. Ayra has no job. She gets one free tube of ointment a month from the government hospital, but a tube lasts for only a few days.
So everyday she is knocking on the doors of charity organizations, ready with papers to show why her son deserves help. She has become a familiar face to some of these organizations that the guards and receptionists no longer ask her name, just readily gives her the paper that she would show to pharmacies so she can get the next week’s ointment tube for free.
She is ready to do this for however long it takes, she says. She is only 21 years old, but Lucky is now her life.
According to the Institute of Human Genetics, there are around 400 Filipinos with rare diseases, and only ten geneticists in the whole country who specialize in treating them.
There was a legislation in Congress seven years ago to address this problem. It only became a law last March 3, one of the last bills that Noynoy Aquino signed as a parting gift.
Under the new law, Filipinos with rare diseases will be treated as Persons with Disabilities or PWDs and therefore entitled to benefits such as discounts to medicines and medical services. It will also try to establish a scheme that will train more physicians to be geneticists. Hopefully this will lessen cases of misdiagnosis, which are very common with rare disease patients.
The law also provides for the setting up of telemedicine that will connect rural health workers to a network of specialists so patients who do not have access to hospitals can still be given the right medical attention.
Ayra remembers the first year of Lucky’s life. They didn’t know what was wrong with him, and no doctor can point it out.
Dr. Carmencita Padilla, the Chancellor of UP Manila and among those who helped draft the law, is hopeful of the doors that will open with the Rare Disease Act. However, she admits that finding cures to the diseases remains a farfetched dream for the Philippines. For now we hope that the rest of the world can figure it out.
It is just a reality that we face. We just don’t have enough money to fund extensive medical research.
Moreover, the Implementing Rules and Regulations (IRR) for the Rare Disease Act has not been released. Details have yet to be fine-tuned such as medical insurance, and whether the likes of Lucky can have their treatment for free.
Lucky Imasa is five years old. When he grows up, he wants to be a pilot. They’ve been told the average lifespan of a butterfly baby is 20 years. Ayra refuses to believe it. She found a butterfly baby on the internet who lived up to 60.
Through everything, Ayra believes his son will become a pilot. He will live up to 60. She did, after all, name him Lucky.
Editor’s Note: For those who wish to help Lucky, please leave a comment below with your e-mail address and we will follow up with you. Thank you very much.
[Entry 171, The SubSelfie Blog]
About the Authors:
Edma Remillano produced the documentary. She is the Manager for Advocacies for SubSelfie.com. She is also a News Writer for State of the Nation with Jessica Soho. More importantly, she is the owner of Edma’s Homemade Cupcakes. Life is what we make of it, or so she says. Journalism 2010, UP Diliman. Read more of her articles here.
Lian Nami Buan wrote the article. She met Lucky and Ayra when she reported on the signing of the Rare Disease Act last March. The story never aired. She is the Managing Director and the European Bureau Chief of SubSelfie.com. She also leads the #SubStory and #TanawMindanao segments of the website. She was a news producer for GMA News for six years before she moved to England to take up her Masters in Digital Journalism at the Goldsmiths, University of London. She wants to shift focus to human rights, particularly indigenous people, women and migration. Whenever she has money, she travels to collect feelings for writing material. Journalism 2010, UST. Read more of her articles here.