I’ve been so impressed with the efforts of Hemophilia Federation of America (HFA) to help our American community in Puerto Rico, that I wanted to provide their update on what’s happening with their relief efforts. We just made a donation, and I hope that you will too! People are still affected by the devastation of Hurricane Marie.
by Hemophilia Federation of America
of Assistance Provided
We remain in contact with families affected by natural
disasters. Requests from families in California, Texas, and Florida have
dwindled, but we continue to provide regular assistance to families in Puerto
Rico who are still coping with the aftermath of Hurricane Maria.
January 31, 2018, Helping Hands (for “Together We Care”) has processed 80 applications for disaster relief. Total
relief funds distributed to date are $19,708.53. Moving into February, there are 13 pending applications in the works with
needs identified at approximately $26,000 and others to follow up on.
Primary types of assistance distributed includes groceries,
batteries, clothing, toiletries, cash assistance for household bills, aqua tablets,
water, first aid items, cold packs, and other basic needs and rebuild supplies.
We Care: Next Steps
The Helping Hands team and volunteers continue to support
requests for short-term immediate support and long-term needs such as home
repairs, furniture, etc.
Our team of social workers/counselors organized an extended outreach plan in late January 2018 to reach out to
families identified by the HTC that have not yet been served in our assistance
records. Cell phone service seems to be largely up and running now so the
current focus is via phone contact vs. home visits. Outreach includes an
assessment of short and long-term needs and evaluating if assistance should be
provided to the family.
With news reports of FEMA ending aid to Puerto Rico and
basic services still unavailable, recovery has been a slow journey for many
Puerto Ricans. January 31, 2018 new reports indicate over 500,000 households are still without power on the island, particularly in rural and mountain
areas. We have met with community families as recently as the last few weeks who
still do not have running water.
In our visits in recent weeks we have seen grocery stores,
gas stations, etc. largely be fully operational. While a great deal of cleanup
remains, roads are more and more accessible.
The added challenge we see is that the months of shut-down resulted in
drastic increase of additional unemployment resulting in no opportunity for
income which only adds to the time it will take to get families back on their
Without question, the work of Together We Care is vital in continuing to support these families.
We can’t forget our Puerto Rican Americans with bleeding disorders once FEMA’s
Note from Kimberly Haugstad:
I had the opportunity to visit Puerto Rico in
January with Martha Boria Negron. It
was a tremendous experience and an opportunity to see the hurricane impact
first hand as well as connect with some of our community in need.
We traveled extensively through the island during our
stay. Without a doubt, families are
still struggling and only slowing getting back to their normal. We provided families with immediate
assistance and made follow-up plans for further support.
A few stories from many experiences are below. These families can’t
help but inspire our desire to do more, provide education and find ways to
connect the community on the island together, and to the US mainland.
Way up in the mountains we met Emanuel, a young
man with severe hemophilia. His home was destroyed in the storm and he and
his father were trapped inside for 2 days. He had a bleed after the hurricane
which necessitated a difficult trip to the ER in San Juan. They are in a
rented apartment now. He was just recently able to return to work. Emanuel and his mom both expressed a wish
to learn more about different therapies and wished they had the chance to
meet other families living with bleeding disorders.
We met Devon whose mom works and his grandmother
takes care of him and his sister during the day. Devon is 6 and very shy. His grandmother
knows he has severe hemophilia but not sure what type. We saw a clear
opportunity for family education here.
Carlos lives with his mom and grandmother. He is in
his late 20’s but as a teen, experienced a head bleed that resulted in
permanent complications. Carlos took us on a tour of his home and shared
where trees had come through his bedroom roof during the storm while he was lying
in bed. They have a partial repair but needed help to get it finished. His
mom was eager to connect and wishes to meet other families. She feels very
isolated right now.
We met Elizer, a man in his 20’s with 3% FVII, a wife and baby boy. After the storm he went to work for FEMA,
it paid more than his regular job. This resulted in his falling off a roof
and fracturing a vertebra. It took 8 hours in the ER to get factor. We met
him 6 days post-accident. In obvious pain, he hadn’t received factor since the
first ER dose. No adult hematologist
had consulted, no plan for additional factor and surgery was under
Finally, I must commend the efforts of the pediatric
HTC in Puerto Rico. We spent an afternoon visiting and the HTC was very welcoming
of our efforts. We walked through an evaluation of our mutual lists of
families, identifying those who neither had yet heard from for future follow-up.
(They also promised to check on Elizer, they remembered him as a child at
their center.) The partnership and giving of time and heart was a gift. We are
About Together We Care: Disaster
The bleeding disorders
community has a long history of rallying around our families in need. In 2017,
the US faced an unprecedented number of natural disasters. National bleeding
disorders organizations such as Hemophilia Federation of America, the National
Hemophilia Foundation, the Hemophilia Alliance, Hemophilia Alliance Foundation,
LA Kelley Communications, the national network of hemophilia treatment centers
and others have partnered to create the “Together We Care” disaster relief assistance fund.
Families helped have been gracious and thankful
for the caring and support.
We’ve had only a few members of the hemophilia community visit Puerto Rico in the wake of
Hurricane Maria on September 20; this report is from Bill Patsakos, who was first from our community to visit from the mainland US. He is uniquely qualified to serve: he is an Army Veteran Medical Service Corp officer, a CVS Pharmacist and FDNY Lieutenant. He is also serving with FEMA, and is the father of three boys with hemophilia. Bill did not
hesitate to travel to devastated San Juan—he has family there too— and meet with Dr. Enid Rivera, pediatric hematologist and chair of hematology, at Hospital Universitario, an HTC
that serves hundreds of bleeding disorder patients. Bill is calm, efficient and deeply caring for his fellow Americans trapped in the aftermathBill shares his eyewitness report with us:“Hurricane Maria, a powerful Category 4 hurricane with wind in excess of 150 mph ripped through Puerto Rico, drenching the island with feet of rain and devastating wind and storm
surge. The entire island endured power outages, complete loss of communications and no running water. The Governor Ricardo Rossello said, “Make no mistake; this is a humanitarian disaster involving 3.4 million US citizens.” San Juan mayor Carmen Yulin Cruz pleaded, “Help us! Without a robust and consistent help we will die.” [She has since claimed that about 900 have died, far beyond the official death toll of 51 lives as of October 20]. Many more are at risk due to disease, lack of infrastructure and access to basic necessities and medical care and medicines.
“The focus has been initially to restore power and communication capabilities to critical
facilities, firehouses, police stations and hospitals. I’ve been able to assist and coordinate medical shipments to four strategic pods located around the island and link up with medical volunteers to triage and deliver care to rural areas that are heavily affected. We’ve been able to visit patients that doctors were concerned about and deliver medications. To date we were able to collect medical supplies, surgical supplies and over the counter meds and approximately $350,000 in factor product and along with injectable drugs, refrigeration and storage. We’ve been able to assist major distributors and pharmacies in gaining assistance from FEMA for fuel and delivery logistics. We’ve communicated needs to volunteer organizations in obtaining tarps for temporary roofing and in some cases place some on roofs of residents. We have visited many hospitals and in particular Centro Medico and the medical school SJU which is the major medical institution on the island.
“There are approximately 100 patients with hemophilia and another 150 with von Willebrand disease. Click here to make a donation to help families with bleeding disorders in Puerto Rico! [Bill met with several patients to assess their needs.] “There’s Osman, a beautiful ten-month-old baby boy with hemophilia A. Maria Rodriguez Diaz, his mom, only 21, also experiences bleeds but was not diagnosed. “Osman has a newborn baby sister, who also has a bleeding disorder. Maria had to stop working as a security guard since she is frequently taking
her kids to doctor’s appointments. The children’s father is currently working daily 12-hour shifts
as a security guard. During the hurricane their house was completely soaked since some of their windows didn’t resist the strong winds. All their furniture, clothes, and babies’ articles were damaged. Three weeks after the hurricane they only have water a couple of hours a day, mostly at night, and no electric power. Maria has been struggling to find access to the medication Amicar, since the pharmacies contracted with Medicaid didn’t have it available. She was very thankful that she would receive it as part of donations to the Pediatric Hospital. It’s sad how Maria says she’s ok while everything is going so badly for them.
“We also met Joanne, a 20-year-old woman who was diagnosed with severe factor 5 deficiency (a prevalence of about one in a million). We listened to her story as she was being infused with factor. She lived with her stepmother, aunt, uncle and grandma in Ponce. They were all evacuated from their home the day before the hurricane, since the house is near the beach. They lived in a refuge center for five days until they were able to return to their home. When they arrived, what they knew as their home was no more. Their house was flooded, the floor on
top of theirs, where Joanne’s cousin lived with his family, was completely destroyed. So now there are eight members of the family staying in a space of a living room/bedroom with only two beds, no water and no electric power. Joanne sleeps in one bed with her grandmother
(an open heart surgery patient, insulin dependent diabetic with asthma). They have a very small generator to keep the insulin cool, but with the gas shortage, they have to wake at 4 am to get in line to buy gas. It has been very difficult for them to be able to purchase drinking water and in their area there is almost no food available in stores. She tried to smile but she seemed very sad and hopeless.
“We then traveled to see Victoria Pereira, a patient who left the Island and is currently receiving help from HFA through their Helping Hands program on the mainland. As we arrived to her address, we sadly saw that the house was completely destroyed. “The people
of Puerto Rico are strong and resilient with tremendous dignity—they are Americans forced to live in third world conditions. We must work to restore Puerto Rico’s infrastructure while
simultaneously assisting their economy and jobs or else the island will face a mass exodus to the continental U.S. To date, 40,000 people have moved to the mainland US since Maria has struck. Please donate your time and money!” Click here to make a donation to help families with hemophilia in Puerto Rico through HFA, a reputable organization that will make a direct donation to the families!
Puerto Rico continues to struggle from the ruins of Hurricane Maria, which struck the island on September 20. The hemophilia community is blessed to have incredible volunteers like Liliana Gomez of Florida, and Bill Patsakos of New York, both parents of children with hemophilia, who have been to Puerto Rico at least twice (Lily is there right now) to gather information on the families affected, and to bring supplies. They’ve also been instrumental in helping us to form a plan on how to get funding to these families, like Carlinette.
Carlinette Aquino Monserrate is the mother of Yensen Yahir Garcia-Aquino, age 7, and Kyanzel Derich Alicea-Aquino, age 22 months. Carlinette, a single mom, endured the hurricane alone with her two children.
“The hurricane winds were very strong and loud, and my children were all very scared,” she told Lily. “Water kept coming in through all the windows and through the roof for many long, eternal hours. I kept peeking through the window. It was horrifying to see as the wind would actually lift up the car! I was so scared that the wind would flip it or throw it against the house.”
Carlinette says she will never forget the loud crashing noises against the house from all the flying debris. “It was a nightmare, but we feel blessed to be alive.”Like most families, she lost most of her furniture and the leaking roof has ruined the few items she had left. “I worry day to day about getting milk for the kids,” she shared. “It’s very hard to find ice.” Carlinette is struggling without a job and just trying to manage this situation. “I know I’m not alone and want to thank you for remembering us and coming out here to help us. We continue to be blessed with your help, our treatment center and the help we now know is coming to us through the foundation and our own community.”
How can you help families like Carlinette’s? Hemophilia Federation of America, in conjunction with NHF, Coalition of Hemophilia B, Hemophilia Alliance and many others, have jointly developed an excellent plan to gather funds from our community, and then distribute funds directly to families through HFA’s disaster relief fund, in a campaign called Together We Care. This program ensures that funds will be used to rebuild homes and provide emergency assistance. All donations will be tracked, and the success stories will be documented and shared in the near future. Please consider donating and visit here for more information!
Hemophilia Federation of America, in conjunction with NHF, Coalition of Hemophilia B, Hemophilia Alliance and many others, have jointly developed an excellent plan to gather funds from our community, and then distribute funds directly to families through HFA’s disaster relief fund, in a campaign called Together We Care. This program ensures that funds will be used to rebuild homes and provide emergency assistance. All donations will be tracked, and the success stories will be documented and shared in the near future. Please consider donating and visit here for more information!
Meet Radames Castillo-Toa, and parents Auraliz Martinez and Francisco Castillo. Real Americans with hemophilia who suffered catastrophic loss when Hurricane Maria struck Puerto Rico on September 20. Lily Gomez, a mother of a child with hemophilia who lives in Miami, visited the island to assess damage, meet families and return with a report and recommendations for aid.
Lily shares that the oldest son Radames described the hurricane landfall as terrible. “Everything was flying around outside, and then inside our home we lost the roof. It was a long day.”
The father, Francisco, indicated that the family lost everything when part of the roof flew away, because everything got wet and the walls cracked. They had to evacuate and go to his mother-in law’s home and try to wait for FEMA there. In the aftermath, Francisco tried to cover the roof but the panels and the tarp he got are not enough.
“When it rains outside, it rains inside,” he commented. He added that an electrical pole flew away with the wind, leaving the family in the dark. Fortunately, he was able to borrow a
generator to keep the factor refrigerated. They are back at the house now, but are in desperate need of a new roof. Each time it rains, everything gets wet again.
Lily said, “We found them retrieving water from a spring coming out through a PVC pipe on the side of the mountain. He said he doesn’t know where the water is coming from but that’s the only water they have available for bathing, washing and toilets. They boil the water when they need drinking water. He said he knows about the problems with contaminated water. He said his wife leaves early in the morning to find drinking water.”
Communication is almost impossible, as there is barely any signal. The family submitted a request to FEMA for a roof, but FEMA is overwhelmed too. The family is still waiting. The father told Lily, “Thank God we are alive and working together to meet our needs.”
What to do? I am on the phone weekly with Kimberly Haugstad, executive director of HFA, wonder woman and also mother of a child with hemophilia. Hemophilia Federation of America has a disaster relief program, the only one of its kind for Americans with hemophilia, and probably this week we will confirm a plan to get funds to Radames and his family for a new roof. Imagine if your home looked like the photos below. Americans need to help Americans now, and our hemophilia community needs to start giving. During this month of Thanksgiving, it’s the right thing to do. www.hemophiliafed.org
On September 20, Hurricane Maria ripped through the sunny, tropical paradise of Puerto Rico. With sustained winds of 175 mph, Maria has been classified as Category 4 hurricane, and one of the deadliest to hit the island. It’s the tenth most intense storm ever in the Atlantic region. Wind, flooding, downed power lines—the island was battered to its knees. Currently 75% of the island still lacks electricity and many residents—Americans—have lost everything. It’s an ongoing humanitarian crisis that needs our help. For those with hemophilia on the island, access to medical care and factor was cut off. Below is one VWD family’s story of riding out the storm, and the aftermath.
Victoria Pereira Figueroa is only 19 years old and lives in Canovanas San Isidro, Puerto Rico with her family. She has type 1 VWD. When they were warned of the impending twin sister hurricanes, Irma and Maria, she felt her family was well prepared for the arrival of a strong hurricane. With each “tolmentera,” thunderstorm, the family purchased water and necessity items, and prepared packages for each one. They live in a rented concrete house, which seemed very stable.
“During Hurricane Maria, my little sister Larah was very scared, so my mom decided to move us with our beds on the first floor as it seemed safer,” Victoria recounts. “At about six o’clock in the morning, September 21, when Maria lashed in her second round with all her fury, our house completely flooded filling with more than eight feet of water! We had to take refuge in a hurricane in a school that is four houses away from ours—it was very dangerous to go out. At the emergency shelter they received me, my family and even my puppy!” Victoria and her family and puppy spent two weeks in the shelter, with other families. Conditions were difficult. There was a lack of essential necessities such as water, light at night, food and a place to sleep. The
family had to sleep on the floor, with the puppy curled up tightly next to them.
The family also suffered lack of factor, and contracted several viruses that were spreading rapidly in a place lacking sanitary conditions. But the close quarters and survival conditions had one ray of light: “We were able to make good friendship,” said Victoria.
The aftermath was shocking; Victoria’s neighborhood was devastated. Her world was upended.
“Two days after the hurricane my parents went to get the floodwater out of the house and clean up. When I had the opportunity to go to my house it was very shocking for me to see what was destroyed. My bedroom was a mess, my desk was completely smashed together with all my University books and notes; everything was scattered on the floor, under the water and mud. I was very distressed to see my things like that.”
Victoria was heartbroken, but her family was safe, her puppy still by her side, and her spirit unbroken. Remarkably, she adds, “Rather than just worry about ourselves, I am trying to continue helping others in need, and I’m returning to the shelter to help the children, with games and activities like painting.” Victoria, in the midst of terror, then devastation, has still managed to find a way to give back. Her community has rallied together. Can we do the same for our hemophilia families there, from the comfort of our homes on the mainland?
Hemophilia Federation of America has a fund dedicated to raising money solely for the families of Hurricane Maria, to be given directly to them to aid in rebuilding their homes and lives. We will ensure the money will be destined in their hands and bank accounts, and we will track its usage.
Having helped impoverished families in developing countries for over 20 years, I’ve seen the promise and pitfalls of donating money. I can ensure this money will be used properly and with accountability to benefit families directly. It’s our mission and method of operating. HFA Executive Director Kimberly Haugstad and I are working together on this. Please consider donating today! We will be making trips to PR soon to deliver funds and oversee their usage.