Father Don

Philippine Journal: Day 7

Friday, October 17: This was the kind of day you simply live for when traveling to developing countries for hemophilia. Now in Cebu, second largest city in the Philippines, Rose Noyes, Father Don Kill, Andrea Trinidad-Echavez (a patient with VWD and mother to a daughter with VWD) and I went to the Perpetual Succor Hospital to meet with the hematology team. But we heard that there was actually a patient admitted to the ward so we went to check it out. There in the overcrowded pediatric department was a one year old baby, Christian, who was bleeding from his head. The mother was breastfeeding him, trying to quiet him. They both looked uncomfortable: She was standing in the middle of a busy hallway; he was wrapped in a bloodied bandage, with an IV stuck in his foot. We spoke with the nurses who told us Christian had fallen last week. He had received fresh frozen plasma (FFP) but the bleeding continued. Feeing helpless and sad, I recalled I happened to have stuck a vial of factor in my purse to show reporters later at our press conference. I took it out and everyone’s eyes lit up. I might as well have taken out a bar of gold!

The nurses at once administered the factor VIII concentrate to the baby. The mother was a little wary of me, but when she learned I also had a son, and that we would enroll her in Save One Life, her face relaxed into an expression of gratitude.

It hits me hard to think that not only do countries like the Philippines not get factor (only the very wealthy will buy it out of pocket), but patients must purchase FFP or cryo! Indigent patients like Christian’s mom go to the public hospital where they received free medical services, but not medical items. All patients must pay for gauze, needles, syringes, bandages, and blood products. A bag of FFP costs about $30 US. This is one half to one month’s salary for a family.

Satisfied with the happy outcome, we then were ushered into a room jam packed with families with hemophilia. These were patients registered with the local hemophilia organization, HAP-C (Hemophilia of the Philippines, Cebu). This is a well run group, and the sheer number of families attending attests to their good rapport with the community and ability to organize. Everyone looked so happy to see us. We had some presentations. A young man named Ed stood up and told us that he won’t let hemophilia stop him from attending college and becoming an employee some day. Another young man, Jurich, also stoop to give a testimonial about how he will not let hemophilia defeat him. Jurich could be a motivational speaker some day!

We then had to excuse ourselves to give some presentations to a large group of residents in the auditorium. I looked up and saw a banner with all our names printed on it to welcome us. We spoke about the importance to learn about hemophilia, to treat the patients at once, to work with HAP-C, and to listen to parents when they tell you, as doctors, something is wrong. Andrea gave an important perspective on VWD, which is largely undiagnosed in the Philippines. Thanks to Andrea, who used to be a reporter with the national newspaper Inquirer, had an interview with the press afterwards. The reporters published their articles the next day, and gave an excellent overview of our meeting and of hemophilia.

After this meeting we returned to the most important people on the face of the earth, the hemophilia families We told them that we were enrolling everyone in Save One Life, our child sponsorship program, and that the money could be used to help pay for school, transportation to the clinic, or FFP or cryo. Father Don stressed that they continue to work with HAP-C, and to be empowered.

See photos of the whole trip here.

You might think how hard it must be to feel empowered when there is no factor, and when a family cannot afford even cryo. But you would be amazed at the resilience we see here. Families come to meetings, even when there is nothing to offer but snacks. Families have hope. I don’t doubt that the pervasive faith I see everywhere on these islands helps not only to cope with hemophilia, but helps them to bond together. As a community, they are strong. But they are in great need. I looked forward to our next leg of the trip, where we would go to more rural communities in the south. We said our good byes to the families, pledging to stay in touch and to offer assistance.

Off to the Philippines

It’s Monday in the Philippines and I have landed. I’m visiting for 12 days, to a country that is the single largest recipient of our humanitarian donations of factor. Although we have had contact with the Philippines for years, and have provided aid, I have never visited. This trip will give me an in depth tour of the situation that Filipinos with hemophilia live in. Most are poor, many are crippled. There is not enough factor for everyone, reducing the Filipinos to beggars sometimes. Life can be very hard for them. Several of the teens and young men we have tried to help have died this year.

We provide sponsorship for about 20 children and young men with hemophilia through Save One Life, our sponsorship program. I am hoping to meet most of them, and perhaps enroll some more.

See all the photos of the trip here.

Our guide through this eye-opening trip is Father Don Kill, a Columban priest who is also a shrewd organizer and compassionate humanitarian. We met years ago when Father Don discovered a teen living on the streets who couldn’t walk. In taking the boy to his mission for teens, he discovered the youth had hemophilia. Father Don has since been on a new mission: to find as many boys as possible undiagnosed with hemophilia, and get them the care they need. We are happy to support his efforts when possible.

This trip will take me into clinics in four cities; hemophilia treatment centers; to meetings with the press; meetings with the patients and the patient group, HAPLOS; and best of all, in the very homes of the poor, so we can document their lives and hopefully find help for them when I return to the US. Please check in again in a few days when I hope to have more of our journey posted!

Hemophilia in the Philippines

We enjoyed a visit last Friday by Father Don Kill, a Columban priest who has a mission in the Philippines. He operates a home for teens without families or homes. About five years ago he discovered a boy on the streets who was unable to walk, and whose family was unable to care for him. Father Don took him in and through a variety of testing to find out what was wrong, discovered that “Dodong” had hemophilia; even Dodong didn’t know it. Father Don contacted his home parish in Toledo, Ohio, for help, which then contacted an Ohio NHF chapter, which then contacted us! Dodong soon had a donation of factor.

Since then, Father Don has discovered about 20 children with hemophilia throughout the province he works in. Through our partnership, we are bringing care to all. Father Don registers the boys with the national hemophlia organization, has them tested at the HTC in Manila, and requests factor donations from Project SHARE. As Father Don is a trusted colleague, we also enrolled many of the boys in Save One Life, our child sponsorship program. So in addition to factor, these boys are getting an annual stipend of $240 to ease the burden of poverty and a chronic disorder.

Every year Father Don comes to the US to visit all his sponsors and to fund raise. This includes a visit to us, to brief us on developments, to collect more factor to bring to the Philippines, and to go to lunch with us. This year we made extra contributions to pay for having some of the boys travel to Manila for testing, and also contributed to pay for antibiotics for one young man with inhibitors, who is having a very rough time currently. Father Don is a valued partner in care, and our boys in the Philippines are fortunate to have such an angel on their side. And so are we!

If you’d like to learn more, visit www.SaveOneLife.net

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