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.
33 Comments Add yours
Hi please send email where we can help. Thank you.
Please get in touch! I’d like to help.
Will need mailing address. Will send some lotions and cleansers.
Negative ion (same as what was featured in KMJS) might help. If we can send a sample to the family.
Will email you po.
Thanks for sharing this! Dermatologists (not geneticists) are often at the frontline in the diagnosis and management of “butterfly babies”, those kids with a rare genetic disorder called EPIDERMOLYSIS BULLOSA (EB) where a genetic defect causes the skin to blister at the lightest touch. There are different variants and looking at the skin lesions, I think Lucky/Jhon might have the severe form, Dystrophic EB. There is no cure and daily wound cleaning, pain management, and dressings are usually the only options available. We do not have an EB diagnosis lab in the Philippines, but I and my colleagues at the Philippine Dermatological Society (PDS) are working on establishing one. There are a handful of us dermatologists who have been trained to treat patients with this often debilitating disease. I myself trained in Sydney with an EB expert, Prof. Dedee Murrell. Our group in PDS has sent skin samples to the EB lab at St. George Hospital in Sydney of Filipino kids we suspect have EB. Prof. Murrell and the Australian Blistering Diseases Foundation (ABDF) have already helped some Filipino kids in terms of diagnosis. Other countries have medical insurance funded by the government that usually cover for hospital bills, and in Australia they have a medical dressings/bandages scheme to help families with the huge cost of dressing changes in EB. The Philippines does not have this yet. But please know that we now have dermatologists who are EB specialists and are here to help. Please send me an email.
Hi, im waiting for your email. Thanks
Plase let me know how I can help
Hi, here are the email addresses of people including mine, who are interested to help Baby Lucky and his mom Ayra Ruiz. Looking forward to hearing from you soon. Thank you.
Please send me details how we can send donation. Thanks.
Pls send me an email. firstname.lastname@example.org
Hi please let me know where i can send donations. Thank you
I would like to help. Please send me an email. Thank you.
Hi! I want to help. Kindly contact me. Thanks!
I’d like to help. Please contact me
I’d like to help if I can. Please email me the details. Thank you x be strong little Lucky x
How can we help?
I want to help. Pls contact me.
Kindly send me an email on how to help. Thanks
Hi, pls contact me. Thank you.
Please let me know how I can help.
Thank you for sharing Lucky’s story. I saw his story featured in CNN Phil just yesterday. For 16 years whenever my psoriasis flares up, I thought it was painful but its nothing compared to Lucky’s pain. Pls contact me. Thanks.
LikeLiked by 1 person
Hi Cris thank you for your concern. We will send you an e-mail now.
Thank you for sharing. I want to help. Pls contact me.
Thank you Dra. Kate Magbuhos.
We would like to send some products for John. But we would like to be advised on how his pediatrician and doctors will approve of it.
Mustela products are natural.
Mustela has no medicine content.
We have fragrance free products for sensitive skin. Kindly let us know if these are appropriate, and if approved by John’s physicians.
Praying for John and his family.
This is good news. Will send you an e-mail using the address you provided here! 🙂
i tried to contact mustela philippines to send samples of their baby products for lucky directly to them.
i attached the link of this video so i think they’d try to contact you first for other details as to how to contact lucky’s mommy.thanks!
Hi Kate thank you very much! Please help us follow this up. Lucky is in dire need of baby products.