Success and Impact Stories Report 2016

he department of La Libertad. FUSAL serves this community pment programs. Its main goal is to build, along with the , in the context of social violence prevention.men who work hard for their families, but still live in poorpenses in what is necessary, in order to support their children e Family Circles and gave each of them clothing items that fidence; all of them were very excited to choose any piece thatey loved receiving these clothes because this was a gift that they mselves. We boosted their self-esteem and helped them feel

“I will wear these clothes to go toJosefa Portillo is part of the Family Circles that Proyecto País develops inShe is a strong woman, dedicated to her family and willing to fight aShe has 8 sons and daughters, but only two of them help her. Her youwith her, and Josefa takes care of her grandchildren who are 13, 8daughter and 13 year old granddaughter work helping in a small restakes care of the house and the other kids. The family’s income isweek. They got electricity at home a year ago, but they don't have drso she has to wake up at 2:00 am every day, to reach a water sourceto clean the house and wash dishes, clothing and others. Josefa spenhome, except when she attends the Family Circle meetings for Prhave now become a very important part of her life. “They talk to usto treat them, their rights and our duties as parents. They share with uswith children and how to value them.” -Josefa.At the Family Circle meetings, she has also learned how to make jewelry,new source of income for her family, since she sells the jewelry at the bof the women benefited by World Vision's generous donation of clothinallow her to have new clothes to feel good and look good when she dactivities, like going to church.“I will wear these clothes when I go to church every morning, and wat the hospital with other church members. Thank you, God bless you amighty give you even more. He guided you to help us with these donatiwill bless you even more in return!”- Josefa.

o church!” Puerto de La Libertad. against any difficulty. ungest daughter lives and 6 years old. Her staurant, while Josefas less than $10 a rinking water service, e which will allow her nds her days at royecto País, which about children, how how to learn to livey, which has become abeach. Josefa was one ng. This donation will does her favoritewhen we visit the sickand may He who is all- ions; I am sure that He





Thank

k you!

FACTOSPECIAL REP

OR VIII PORT/2016

Hospital Nacional de NiñoLocated in the capital of El Salvador, the Hospital de Niños Benthat receives all children with complex illnesses and needs froother public hospital in El Salvador.Every day, hundreds of children from different parts of the coand Guatemala- visit it. Being a public hospital means that strugproblem and most of the patients cannot afford to buy medicineThere is not enough space to treat all the patients who come anOften times, the hospital does not have all the necessary pediat

os Benjamín Bloom njamín Bloom is a pediatric hospital with third level specialties, om all over the country –conditions that are not treated in any ountry –and often from neighbouring countries, like Honduras ggles are always present: the lack of medicines are a permanent es and have to wait long periods of time to get what they need. nd their parents who want to spend all the time with their kids. tric medical supplies – such as catheters, syringes, needles, etc.

The Hematology UnitAt the hospital's sixth floor, one finds the hematology area whnationwide come to this specialized hospital. We have an advancan do country surveys and pediatric research, because no onediagnosis are made here”, said Doctor Reyes, the chief in charge oThe department has trained personnel to treat children with hemphysiotherapist, a team of medical students and a laboratory.

here all children with hemophilia are treated. “All the childrenntage because it is a small country, within a small territory… we else treats hemophilia, and the technological development andof the hematology area in the hospital.mophilia. There are 4 hematologists, skilled nursing staff, a





StatisticsThe statistics of hemophiliac patients remain the samein the hospital. There are no drastic rises due to thesame hereditary nature of the disease. Generally thereare 3 or 4 new cases per year, but the hospital keepsdeveloping diagnosis campaigns to identify cases ofthose who still do not know their condition, andalso to educate the families of hemophiliac patientsabout the chances of their future generations toinherit the disease.Currently, at Hospital Benjamín Bloom, there are 110patients with hemophilia. Ninety-six of them havehemophilia A, and 14 of them have hemophilia B.Of the severe cases, 69 have hemophilia A and 11 havehemophilia B. The moderate cases are 11 in hemophiliaA and 12 in hemophilia B.25 of these cases are on a prophylaxis regimen.Source: Dr. Ana Reyes, hematologist at the Benjamin Bloom Hospital.





ProphylaxisSince 2011, the hospital established a prophylaxis programwith a group 25 children. Every week, parents andchildren come from their communities, many of them fromreally far, to receive from the hospital the Factor VIII thatthey’ll need for the rest of the week.The hospital takes charge and facilitates all of theinformation and education about the use andmanagement of the Factor VIII. “We have a nurse thatteaches the children how to self-infuse at home, we givethem the medication every week or two weeks, depending onhow we assess them or how far they live from the hospital”,said Doctor Ana Reyes.From all hemophiliac patients, only 25 are on aprophylaxis regimen. The often lack of factor VIII, theurgent need to control severe patients and the varietyof difficulties that families face, like the lack of a placeto properly store the Factor VIII medication, the longdistances, and the lack of attachment, among others, aresome of the causes why some children can be on aprophylaxis regimen and some others can't.“You have to be committed to the treatment. Patients haveto accept it and the parents have to accept it. We have toteach them how to use Factor VIII, how to infuse it. It isimportant to know how they will transport it, and who isgoing to take care of their medical needs in theircommunities… We, as a hospital, are the controllers of thiscommitment” –Dr. Ana Reyes.

The voices of hope:The parentsThe hematology unit at the Hospital Benjamín Bloom is always filledwith many kinds of emotions. You hear babies crying out ofhunger, or laughing because their mothers are feeding orcuddling them. You see all of the doctors and medicalstudents spending their time with the patients. The nurses aretalking and playing with the kids. The little patients are friends witheach other, and spend their days together. The pain is easier tobear amongst laughter and conversation.This area is not only a place to fight against disease. This place ishome for all of the patients who spend weeks, months and evenyears there. The team of nurses, doctors and medical students arepart of this big family. But inside those walls there are some silentheroes: the devoted parents of the hemophiliac children.Wherever you look, you can see them. They are holding theirbabies in their arms, or distracting them while they're having apainful treatment done, or sometimes just waiting outside therooms while their children are being treated. They are there, givingtheir love and dedication. “We spend so much time in the hospital, we look like another painting on the walls,” says one mother.Most of them left their communities, their jobs, careers and eventheir families, in order to take care of their sick children. Theyassumed a full-time dedicated job to keep their babies as healthyas they can. The children are of all ages, from newborn babiesto teenagers. They all fight against hemophilia, and 25 of themare part of the prophylaxis program.Starting the prophylaxis regimen was hard for the parents at thebeginning. When asked about how they felt, when they knewthey had to infuse the Factor VIII into their childrenthemselves, all of the parents had the same reaction:

“Oh! We cried, we shivered, we were scared! But today we can doit, even they (the child) know how to self-infuse.” Each parenthas a different story of love, hope and strength.The hardest part is when the hospital runs out of Factor VIII andthey have to struggle for months, practically living in the hospitalas the children suffer constant bleeding. During the last fewmonths of 2016, there wasn’t any Factor VIII medication at thehospital, and they had to spend all day at the hospital. “We cannotgo out, we cannot visit or family or go on trips because they areunprotected”, said one mother. It is tough, since the unit does nothave the necessary space for all patients to fit, not only thehemophiliac, but all hematological conditions. As another momsaid, “There is no place here to admit the children, they sometimeseven leave us on the hallways…”FightersIrma Suncín is part of this group of loving parents. Her son isOseas, a 17 year-old boy who is one of the severe cases ofhemophilia that the hospital takes care of. For a couple of yearsnow, he has been in a prophylaxis regimen, and together with hismom Irma's love and his best efforts, he recently achieved amilestone: “My son graduated from high school last Friday…There is a little school at the Hospital where he has studied sincesixth grade. With the prophylaxis regimen and studying, hemanaged to achieve it, and now he is going to university. He is goingto study Industrial Engineering, at the University of El Salvador”.The path to a normal life has been extremely hard for Oseas andIrma, especially when Factor VIII becomes unavailable. “It’s beentwo or three months since we ran out of Factor VIII. It is a realtorture to go through the long months of waiting when thismedication is not available, never knowing when it will be availableagain.”

Somayra Yamileth Escobar is another mom who comes fromMiguel, a city located about 105 miles away from the hospital.has two sons with hemophilia, but only one of them is in prophyregimen. “I was one of the moms who were in denial about prophyladid not want it, I thought about all the risks! In my case I felt it was tharder because I have to dedicate my time to both my sons”,Somayra.This was one of the main reasons for which she was scared abthe prophylaxis regimen at first, along with the expensestraveling and the time that they have to dedicate to travelingwould be great if all of the hemophiliac patients were in a prophylprogram, but it is not possible and that is why only one of mys sonundergoing the regimen and the other is not. But we are here fighting,will keep fighting”, she said.“Medicine for the children is so important, if they do not have it thenhave to spend all the time at the hospital, they cannot go to schoThey feel so sick and when they talk to you about it you feel horrible.so painful to see how much they suffer”, said Jacqueline ElizabSalmerón.Jacqueline is the mother of two children with hemophilia, Micha13 year-old boy who is part of the prophylaxis program and a 9 moold baby boy. “My baby son has hemophilia too; I was not expecting tbut I am fighting for them… I don't know how I will do, only God canme”.Her hopes are always on the medicine, since it has changedlife of her older son. “It is so precious to see them waking up feegood... Michael used to wake up crying because he wanted to gschool, but we had to take him to hospital instead, at all hours, eduring the night” .Michael embraced his treatment and feels happy to live a norlife. “Now Michael happily says ‘Mom, even though I get pinched, Ihappy because I do not get sick, I do not feel pain’. He feels joyous tto school; he can now go out!”

San Sheylaxisaxis. Itwice saysbouts ofg: “It laxis ns is, and theyool… . It is bethael, aonth that, help the elinggo to even rmalI feelto go

“My life is dedicated to hThe story of Pablo and BlancaThey travel 73 miles every week from the city of Usulután tSalvador, so that they may be close to the hospital. They leavcomfort of their own home, their families and friends, to take carehealth. They are Blanca Verónica Mejía, a 37 year old single mothPablo Ernesto, a 13 year old boy with a severe case of hemophilia,one of the patients at the Hospital de Niños Benjamín Bloom.Blanca dedicates her life to protecting the life of her son. Pablo was nborn when his father passed away and had only had the supportmother. “I was alone, the child's father died when I was pregnant. I amI have dedicate all my time to him”.She works from Monday to Friday as a housemaid. The situatioharder when Pablo was younger; they did not have a place to stay,was not on prophylaxis regimen and they had to travel for hours tothe hospital, where he used to spend long periods of time. The owthe house where Blanca works, after seeing her situation, welcthem into her house, giving them a small room to live: “She sawwas raveling from here to there, she told me that I was bettstaying, avoiding an accident by traveling so much... and sobeen,” Blanca said.With the money that Blanca makes, the family buys food and takescan't buy anything else; the clothes, toys and other objects they havThe weekends they spend in Usulután, where Blanca helps her sistcare of Pablo at the same time. “My life is dedicated to him, I cannottheir home is a small rural house that is part of a farm estate, where BPablo recently finished fifth grade. He studied first grade at a schoolschool development, since he spend most of his time at the hospitthat. Fortunately, he enrolled in the hospital’s school, where he has bgrade.

him” to San ve the e of his her and who is not yet t of his m alone, on was , Pablo o go to wner of comed w that I ter off it has a portion of the money for savings, in case of an emergency. They ve are gifts from other people. ter with a small family business at home, so she can work and take t leave him, I cannot neglect him. He can get hurt easily”. In Usulután, Blanca's 5 siblings and niece lives. back in his town, but hemophilia did not allow him to have a normal tal and even his teachers told Blanca that he couldn’t continue like been studying since then and he is now ready to continue unto sixth

These dreams have been boosted thanks to the generous donatiocontinue his prophylaxis treatment and thus, continue have a normaany medication, so it was a wonderful surprise for Blanca and Pablo to“Thank you so much! I came here today worried; I brought Pablo againso thankful to have it now, I am very happy. I feel happy because Isupporting us in this path!”

When he is not in classes, he spends time at home, laying on a hammock or playing by himself. At Usulután he has friends and cousins to play with, even though he always tries to be careful, to avoid any injury. Pablo has been in a prophylaxis program for 6 years now. Since the day treatment started, his life has changed immensely for the better, mainly because the amount of time that he spends at the hospital has been reduced. He went from being in the hospital every week, to going only once or twice a year. Still, the challenges have been big, even more when there is no Factor VIII available at the hospital, or when Pablo gets injured. “It has been a great challenge. The strenuous exercises and the travelling, because I take him to physiotherapy 3 times a week. I even have had to take him to rivers to walk in water for exercise. The challenge is to keep him stable and well; thank God he is good, he does not have any deformity in his joints”, said Blanca. They have a lot of dreams to keep them going, regardless of all of their difficulties. As a mother, Blanca has faith that her son will be able to overcome any obstacle that the disease may put in fron of him: “My dream is to see him healthy, to see him as a grown man… I have faith in him, in us, and will help him continue with his studies”.on of Factor VIII by Direct Relief, which Pablo Ernesto will receive toal and full life. For many months they had had to go without receiving o receive their necessary supply out of the Direct Relief donation.n after being told many times before there was no Factor VIII… but I am I know there is Factor VIII and he will be much better. Thank you for

“We are only my son andThe story of David and Edith Edith Calderón was in a happy moment in her life: she was ma had a good job in a good workplace, and her first son was gro healthy. Everything was good… until one day, when Edith came h from work, found her 6 month-old baby with swollen knees, c intensely. She had to take him to the hospital, where after several e it was discovered that her son had hemophilia. Edith suspected that it might be hemophilia, since one of her bro has it as well, and there are many other family relatives with the diagnosis. “I used to say that my baby wouldn’t have it, I was ignora that moment because he was most likely to. I felt terrible abou realization, when I did. I have a brother with hemophilia and that’s felt so bad, so much that I lost my job, it affected me in a radical way” Edith. Everything got worst when Edith’s husband disappeared from he lea-ving her alone, jobless and with a sick baby son: “We are only m and I, only the two of us. Because of my baby’s disease, my marriage destroyed, my husband left the country. I didn't have other children and divorced, my marriage was broken… it seems ridiculous but it’s real”. Edith's case is the same as many of the other moms, who have to figh dedicating their lives to protecting the lives of their babies with hem Today, Edith and David live in the metropolitan area of San Salvad comes home and dedicates herself to helping him with homework he loves mathematics and wants to be a computer engineer. He is Niños Benjamín Bloom. For two years now he has been infused with Factor VIII, which h development in school. David has not only dealt with the disease anything about hemophilia: his teachers did not know how to ma fragile and did not let him to play with them. His health and self-este

I” arried, owing home cryingexams others same ant in ut the why I ”, saider life,my son e was d I gotht alone with their children's illnesses, with no one to help them andmophilia. dor. Edith works part time while her son goes to school. Then shek and taking are of him through the day. David is now 12 years-old, one of the 25 children in prophylaxis treatment at the Hospital de has allowed him to have a better quality of life and increase his e, but also with the stigma that it causes. Nobody at school knewake his life easier at school, his classmates thought that he was too eem were really low.

“David used saying ‘I hat made me cry Prophylaxis part of their David at an students an containing e But her effo all the pare Fundación VIII available children are They hope t treatment. D and enjoys working as a “He loves tec David is at d feels good ab teachers alwEdith was incredibly touched when she found out about the Factthere was no more left. “God bless your effort! I thank you from allincredible; we are so grateful for your beautiful decision of sending thiswith all my heart and in behalf of my son”.

d to be bullied at school. He did not want to study, he came home te this disease!’ He felt really bad, he had an awful self-esteem, it even y”, Edith said with tears in her eyes. changed David’s life. With his mother support, they turned that r life into something positive for them and others. Edith enrolled nother school and she took the task of talking to the teachers, nd parents about hemophilia. She even handed out flyers everything they needed to know about hemophilia. orts were not only contained to David’s school. Edith, along with ents with kids with hemophilia at the hospital, founded the Salvadoreña de Hemofilia, in order to strive to always have Factor e for the patients. The most active members are the parents whosee in prophylaxis treatment. that at some point all children with hemophilia may be on prophylaxis David loves computers, playing chess, spending time with friends every moment of his life. He is now in fifth grade and dreams of a computer engineer and to be surrounded by computers. chnology a lot”, mentions Edith, smiling as she describes how gooddifficult subjects like math or physics. “But most of all, he is a boy who bout himself; he knows what he wants. David is really mature, all theways congratulate him because he is a good kid”. tor VIII donation from Direct Relief. They desperately needed it, as my heart and from all the other moms who are here. What you did is medicine to Hospital Bloom… It really is a beautiful gesture, I thank you

With your generous donation of Factor VIII, all of the children are nowit. It was a surprise for all the parents, who were not expecting it. “Th“We are so thankful. My son is a severe case and thanks to receiving thisdays” –Irma Suncín.“My grandson is 12 years old and has been in prophylaxis treatment for asupporting us; you are helping our children and are also helping us”, saifor his grandson.Thanks to your generous donation, the Hospital de Niños Benjathe patients in prophylaxis regimens and other hemophiliac patienyou for helping save these children's lives!

w back in the treatment, after going several months without havinghis is a gift from above!” said one mother. Factor VIII, my son will be able to be home with our family during theseabout one year. We thank you so much, and look forward to you alwaysid Jaime Salvador, a devoted grandfather, when receiving Factor VIII amín Bloom is now restocked with Factor VIII and can supplynts, who come in an emergency due to bleeding or injury. Thank

Thank

k you!