Filipino version (English version below)
Mabuhay! Ako si Jonalyn Santos at ako ang kinatawan ng Pilipinas.
Ako po ay isang nurse assistant at kasalukuyang nagtatarabaho sa bahay bilang isang E-commerce VA at graphic designer.
Ang panganay ko ay 15 anyos, sinundan ng isang napaka gandang 5 years old na si Thala, at ngayon ay kasisilang lamang ng aking bunsong lalake na 2 buwang gulang.
Si Thala ay pinanganak na normal ang balat ngunit pagdating ng ikatlong buwan ay nagpakita ng kakaibang kundisyon sa balat. Siya ang kauna unahang nagkaroon ng ichthyosis sa aming lahi. Si Thala ay may EHK (KRT1) dulot ng spontaenous mutation. Napakabibo, malusog at masayahing bata ito sa kabila ng sitwasyon nya.
Sobrang importante sa akin ng EI Cure Project dahil ito ay nagsilbing liwanag na natatanaw namin para sa aming anak na si Thala. (morning star, guiding star)
Gaya ng tala sa langit, ang kagalingan ng kanyang balat ay isang napaka imposibleng pangarap lamang dati. Alam ko na walang lunas ang kundisyong ito kung kaya nakaasa lamang sa ginhawang dulot ng mga pamahid, lotions at creams ang aking anak.
Si Helen Lill ay isa sa pinaka mabuting taong nakilala ko sa pamamagitan ng ISG at FIRST..Siya pa lang ang nakilala kong napaka maalaga at sobrang matulungin . Bilang isang ina, sobrang hinahangaan ko ang katulad nya na kusang loob na tumutulong at nagtuturo sa amin tungkol sa EI.
Dahil kay Helen, nagkaroon ng EI Cure Project at napuno kami ng pag asa. Masaya ang buong pamilya namin dahil parang yung mga tala na natatanaw ko lang, posible pala na maging abot-kamay kahit gaano pa ito kalayo.
Umaasa ako na sa lalong madaling panahon, sa pamamagitan ng proyektong ito ng mga siyentipiko at mananaliksik, maranasan ng ating mga anak ang paggising nang walang magaspang, masakit, matubig, at marupok na balat.
Kahit isang beses sa kanyang buhay, maranasan ni Thala na di siya iba sa karamihan. Ito ang pinaka importanteng panalangin ko, ang kaginhawahan ng anak ko.
Salamat sa mga sponsor na nagsisikap at gumugol ng oras upang tumulong sa mga pamilyang apektado ng EI sa buong mundo.
English version
Long live! I am Jonalyn Santos and I am the Ambassador of the Philippines.
I am a nurse assistant working from home as an E-commerce VA and graphic designer.
My oldest is 15 years old, followed by the very beautiful Thala (5 years), and now my youngest son has just been born and is 2 months old.
Thala was born with skin that looked normal, but by 3 months, her skin became strange and unpredictable, and she was eventually diagnosed with KRT1 EI. She is the first in our family to have ichthyosis and we know her KRT1 gene was caused by a spontaneous mutation. Thala is a super smart, healthy, and happy child despite her situation.
The EI Cure Project is significant to me because it serves as a guiding light we see for our daughter Thala (big morning star, guiding star).
To me, this is more like reaching a star. Finding a cure for her skin was such an impossible dream before. I know that there is no cure for this condition so our daughter only relies on ointments, lotions and creams for relief.
Helen Lill is one of the best people I've met through the ISG and FIRST. I've never met anyone as caring and as helpful as her. I admire her so much because never in my life as a mom had I known another mom who was willing to spend her time trying to help and educate us.
Through Helen, the EI Cure Project started and hope is within our reach. Our whole family is forever grateful. It's like reaching the stars and holding them within my grasp, however far it may seem.
I hope that in a few years, through this collaboration of advocates, scientists, and researchers, our children may be able to experience waking up without rough, painful, watery, and fragile skin.
At least once in her life, Thala will experience that she is not different from the crowd. This is my utmost prayer, the comfort of my child.
We are so grateful to all the people who work hard and spend their time helping families affected by EI around the world.