Project SHARE

The Season for SHAREing

Thanksgiving is celebrated on Thursday across the United States but there are thankful people everywhere this week. One of them is Jagat Man from Nepal. Even though we helped him have a leg amputation, he’s grateful to be alive. He has hemophilia with an inhibitor and the bleeding and subsequent tumor in his leg may have killed him.

We have dozens of stories about those we have helped in impoverished countries, and we are pleased to start sharing them with you on a regular basis on Facebook. Project SHARE (Supplying Hemophilia Aid and RElief) now has its own page, and we welcome you to visit, leave a comment, and enjoy learning about your brothers with hemophilia in faraway places, where factor is usually not available.

Visit us at: http://www.facebook.com/pages/Project-SHARE/149435267732?ref=mf

You will even be able to converse with our friends around the world.

In America this week, we can be thankful for our medical care, and above all, the factor concentrate that keeps our loved ones alive. We at LA Kelley Communications are grateful for the resources to be able to send factor around the world, to those in great need and in pain. Thanks to our sponsors, and also to those of you who have sent factor. Happy Thanksgiving!

The Philippines: Day 9

Though it’s actually Wednesday here now, I am still trying to catch up with my diary. We’ve been on the go nonstop: traveling by boat, car and plane, traversing hundreds of miles, to seek out hemophilia patients in the Philippines.

So far, I arrived in Manila, stayed three days, then went a bit south to Cebu for two days (see previous posts). On Saturday, October 18, we (Andrea Trinidad-Echavez, person with VWD and media expert), Father Don Kill of the Columban Missions here, and I headed out early for a two and a half hour ride to the ferry. We rocketed down coastal roads, catching glimpses of the sea and beaches. Our fearless driver Honorato beeped incessantly to warn people of our deadline to catch the ferry.

The scenery is beautiful: the Philippines, created from volcanic activity, is lush and fertile. Palm trees explode upward into a display of huge leaves and coconuts with a piercing blue sky as backdrop. The weather is sultry and heavy, and the sun scorching. I love it!

The ferry took us and the van across for a 30 minute ride to the island of Negros. The fishing town we disembarked on was alive with activity. We went straight away for a another 30 minute ride to Dumaguete, where we would meet staff from Little Children of the Philippines (LCP), the organization that would become our new partner for Save One Life, Inc.

Everything Father Don has told me these past two years about LCP is true. They are a nonprofit specializing in educating children in all aspects: scholastic, hygiene, livelihood and faith. Many of the staff are themselves graduates, and they are remarkably organized and efficient, yet compassionate.

When we arrived, we walked to a small pavilion, where the families and children with hemophilia waited. Now, it’s one thing to see a child’s face and profile on paper. But to meet them in person? Priceless beyond words. To me they are celebrities, children I have been dying to meet for a long time. Here before me were Allan, Ryan, Joseph, his brother Joshua, Carymar and Reymark. They greeted me with the traditional hello: each child took my hand and touched his forehead to it.

We all were seated so LCP staff could introduce us; Father Don also spoke to the children, all of whom he personally identified in his quest to help those with hemophilia in the Philippines. The children honored us by singing (karaoke is huge here!) and Father Don also knocked off another Elvis song. The parents also got up and together sang a gorgeous song called “Give Thanks,” with spiritual themes. Three mothers than each took the mic, and in tears, thanked Save One Life and Project SHARE for helping their children. Their cries were gut wrenching, and gave only an inkling into the level of the pain they see in their child.

In the midst of this, one boy, Reymar, was not well. He kept his head down by his feet, his shoulder dropped. He was having a severe bleed in his right shoulder. We hurried him to the clinic at LCP, but he needed factor. We had none. So here was a Third World crisis right in front of us: what do you do? He has a major bleed, needs factor, and must settle for cryo or FFP. There is no cryo. FFP costs $30 a bag. He might need 10 bags. His mother sat in despair sobbing while her 15-year-old boy writhed and moaned. It’s not just a matter of going to the hospital to get treatment. She doesn’t have $300. We made a decision then and there to pay for whatever treatment he would get. While they prepared to move him, Andrea knelt down with the family, held their hands and with powerful calm, said a prayer with them.

When they had left, we all felt a bit disconcerted. This was the future of these kids staring them in the face. When they get hurt, what will happen to them? They can see how they cause their mothers so much pain, too. We turned to happier things, like lunch, and then the kids all made incredible thank you cards for their sponsors. I oberserved that Filipinos, in addition to being musically oriented, are extremely creative and artistic. True, agreed the Filipinos present, and they loved to hear that.

We took photos of all the Save One Life boys, and some taped thank you speeches to their individual sponsors: Diane H., Patrick S., Kyle C., Joe C. and John J. of the USA.

Finally we headed out, and LCP agreed to take on all the sponsorship responsibilities in the Dumaguete area as our new partner. Instead of relying on Father Don all the time, we will now use LCP. Father Don, mind you, is busy enough running a home for 26 teens. Like many people, once he met a child with hemophilia five year ago, he could not say no, and has since helped us identify patients and get them treatment. No doubt he has saved lives and much suffering through his actions.

We returned to the hotel a bit amazed at the day. Sobering. It must have worn us out more than we thought: I for one slept 10 straight hours, the first time I have actually been able to sleep since coming here. And I actually felt guilty when I awoke: how many Filipino mothers that night had no sleep because their children cried in pain from untreated bleeds?

The good news the next morning was that Reymar was treated. We purchased Koate DVI, to the tune of $300 for 1,000 IUs for a poor boy. (The pharmacy in this remote place actually stocks it as there is a middle class family in town that pays for it–more on that next time.) There is so much more to be said about the billions made off factor sales, and how little of it will ever come to the majority of people who need it most, who suffer pure agony. I am this week in the rural areas of the Philippines, where life is already harsh, and where children with hemophilia need help every day. Project SHARE donates directly to these children; Save One Life gives them the money to buy FFP or factor or transportation to the clinic. If you can help me to help them, please let us know.

laurie@kelleycom.com
http://www.SaveOneLife.net

The Philippines 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.

The Philippines: Dedication, Love and Service

The Philippines is a large country in the South Pacific, made up of more than 7,000 islands. After enduring 400 years of Spanish rule, and then used as a strategic base by the US during World War II, it has thrown off the yoke of colonialism and struggles as an independent developing country. I am here in Manila until Thursday; so far I’ve seen almost nothing of Manila, due to our heavy schedule, but I have seen devastating amounts of what hemophilia can do when there is no treatment.

The government does not buy factor, despite years of dedicated negotiations by the World Federation of Hemophilia. There are drug distributors here who are licensed to sell some products (NovoSeven, Koate DVI among them) but only the wealthy few with hemophilia can afford them. Even poor patients must pay for basic things like syringes, needles and even band-aids. Life is very hard for the majority of hemophilia patients, and almost every one I meet has some major deformity, trauma or has had a family member die from untreated bleeding.

On Monday we met first thing with a group of reporters representing various national newspapers and magazines. At the invitation of Andrea Trinidad-Echavez, a mother with von Willebrand disease, and media expert, these reporters listened to my presentation of hemophilia, and its symptoms, treatment and effects, followed by extremely emotional testimonials from the patients who attended. One was Angelo Cuevas, 27, who suffered a huge psuedotumor on his hip. He related his story of trying to find treatment, of not being able to afford an operation due to the high cost of factor and the large amount he needed. When he recounted what the pain was like, you could have heard a pin drop. Angelo stammered, bit his lip, and tried to go on. He was flooded with emotions remembering the pain: “It was as if I was going mad. I screamed with pain and my neighbors were scared,” he said in his soft voice. I am not sure many of us know what level of pain that is. I looked around the room as Angelo spoke and saw amputations, twisted hands, feet that cannot be flexed flat, missing eyes, bandages, crutches; so much pain was represented here.

The reporters stayed for 90 minutes and were genuinely moved by what they heard: how could a human not be?

Meeting with Father Don
Elmer

We spent the afternoon then meeting with members of HAPLOS, which stands for Hemophilia Association of the Philippines for Love and Service. Haplos also means “human touch” roughly translated from the local language. This is headed by Rey Sarmenta, the father of a grown man with hemophilia. Rey worked in commercial business for over 30 years, and is educated, well connected and deeply compassionate. He could have retired many years ago to spend each day resting in comfort, but instead has dedicated himself to helping others like his son. HAPLOS is in excellent standing with the WFH, and struggles to help so many while operating with so little. Like in most developing countries, it’s almost impossible to get the government to pay attention to the needs of those with bleeding disorders when there are economic, political, climate and epidemic issues to confront.

We relaxed that evening at the Columban missionary compound we are visiting, guests of Father Don Kill. Father Don has been our main contact here for about five years. Also compassionate and dedicated, he operates a home for teens in Mindanao, in the south. He met a teen with hemophilia one day, took him in, and has been a champion of people with hemophilia ever since. He has turned to us for factor time and again, and his expert ability to organize and follow through has enabled us to get so much factor to the Philippines that this country represents 23% of all our factor donations, making the Philippines our largest recipient of aid.

On Tuesday, October 14, we met first thing in the morning with the patients again, without HAPLOS, to hear their opinions and record their needs. Filipinos are often characterized by their gentleness, and like many Asian people, avoid public confrontation and frown upon outspokenness. How different that is from the America culture, where speaking your mind in public is not only a privilege, but is considered a right (and good entertainment). Allowing patients to speak openly helps them assess their own feelings and needs.

See photos of the whole trip here.

Not surprisingly, the focus was on factor: how to get more, how to share what little is available. Despite the large amounts we have sent, I could see we were only touching the tip of an iceberg! That was momentarily disturbing, because if the Philippines is our largest recipient and we are only serving the needs of a few, but I can’t afford to think like that. What must do whatever we can do.

One mother told how her son had an intracranial bleed and almost died, but was saved with a donation of factor. A man named Elmer told us how he made history: he was the first Filipino patient to have a successful, no complications amputation, with the factor from Project SHARE. (Imagine thinking of how lucky you are to have a successful amputation!) He was very grateful.

Most touching was Jeffrey, a young man with an expression too old for his years. He was accompanied by his mother, who specializes in alternative therapies like massage. Jeffrey is one of five brothers, all with hemophilia. Four have died. Four. With ancient pain in her eyes, the mother told us how each had died: one from an intracranial bleed, one form a motor accident, one from an operation… Jeffrey looked away, his face becoming blank as she spoke. Clearly, Jeffrey was all she had left, and she was desperate to ensure he would live. He is a university student with impeccable English, but they are not wealthy. Without money, Jeffrey could not pay his tuition bill, and his grades would not be released. Without grades, he cannot enroll in next semester’s session. They were not asking for help but only highlighting the difficulties of life here.

How much does his education cost for one semester? $200. I told him we could cover that and we’d find a sponsor for next year. (If anyone reading would like to sponsor Jeffrey, we have enrolled him in Save One Life; just email me and let me know) Jeffrey is studying to be a psychologist and wants to dedicate his career to helping the patients with hemophilia in the Philippines. With all that he has suffered personally, he has turned his pain into a mission. It’s inspiring to see how resilient the human spirit is!

After this meeting we stepped out into the steamy, tropic air and drove through Manila to attend a luncheon meeting by HAPLOS at a Christian center. Lunch was a simple KFC style box lunch and the presentation highlighted HAPLOS’ accomplishments through the years. There is a strong focus on compassion and community. Most of all, HAPLOS stresses psychological support, more than any other country I have visited. “Without factor, sometimes it’s all we can focus on,” one board member said. The board is composed of mostly parents and patients, all volunteers.

A gathering of patients took place after the presentation, and these were all different patients than the ones we had met with that morning. The need, the pain, the suffering…I have never felt so helpless in all my life. While person after person stood and thanked Project SHARE for the factor that helped with a surgery, with a dark time, with a head bleed, with a life saved, I realized that so much more work needs to be done to find a way to close the gap between the haves and have-nots. One young, delicate mother, Olive, stood and told us her 12 year old, factor IX deficient son had been hospitalized for a week with a head bleed, and she broke down crying as she asked for help. A man with an obvious eye trauma stood and said he could not afford to have surgery for his eye; Father Don stepped in and informed him of how to apply for factor through Project SHARE. Another weeping young mother came forward holding her three year old son, whose elbow was swollen and hot—an active bleed. While her son was not crying, indeed looked bored, she was shaking and crying uncontrollably. Was she suffering from guilt? Later on we spoke to her and learned she was recently divorced, and has two children with hemophilia, no money, and under great emotional duress. This is where HAPLOS can excel in helping.

The meeting was capped by lunches for everyone, and the great news that we would be enrolling everyone in Save One Life, which would help ease some of their burdens by providing each person with a US sponsor who will give $20 a month (we will need those sponsors son after I return, so please consider helping). Everyone’s eyes lit up at the news, because so many people in attendance earn so little, and deal with pain that we rarely have to face. Can you imagine having your child with hemophilia actively bleeding, in pain, and not being able to do a single thing to stop it or to help?

Some of the patients had traveled three hours to attend this meeting — three hours by bus, in pain, spending precious pesos. We pledged to reimburse everyone for travel expenses, also much appreciated. As we filtered out of the center, I saw how the entire group shuffled out, walking unevenly from such crippled limbs.


Around 4 pm we left to visit a patient in his home. This is always the favorite part of my trips, we get to enter the world of the patients and directly see their needs — the better to help meet them. We passed the impressive business center of town and then drove by shanties teetering on the banks of muddy rivers. Yancy is an 18-year-old who lives on a dark and greasy looking alley. Crowded, noisy, hot, Yancy and his mom share their two-room dwelling with four other siblings and their father. Hard as it is to fathom that, this was a step up for them! They had recently moved there from a squatter’s place, under power lines. Yancy is a second year university student (college starts at age 16 here) and determined to graduate, despite poverty, overcrowding, a bed on a concrete floor, and untreated hemophilia. He is also available for sponsorship now. Any takers? We spent that evening at a gathering at Rey’s home, sampling delicious local cuisine, relaxing with the doctors and patients, and of course, celebrating with karaoke. I managed to avoid having to sing somehow, and we were entertained by Father Don, who likes to sing Elvis, and Mayette, a board member, who has a gorgeous voice. I could see that HAPLOS really is about love and service, and deep faith. The Philippines is 95% Roman Catholic and faith enters into every aspect of life for the common person. Perhaps this faith has sustained them this far on a journey of immense suffering and yet strong community. Mayette ended our wonderful evening by singing the adopted theme song of HAPLOS, “If We Hold On Together.”

The best news was for last: as we were leaving I learned from Dra. Flerida one of the main hematologists, that factor for Olive’s son, the one with a head bleed) had just arrived that afternoon from our office. Her son was going to be fine.

See photos of the whole trip here.

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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