Together We Care

Puerto Rico Hoy

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.

Disaster Relief
Efforts

 by Hemophilia Federation of America

Summary
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.
As of
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.

Together
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
feet.
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
aid ends.

Additional
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
discussion. 
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
thankful.

 

About Together We Care: Disaster
Relief Efforts

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.
DONATE: www.hemophiliafed.org

Puerto Rico: Soy Carlinette

Lily Gomez bringing supplies to Carlinette

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!

A very happy family

 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!

 

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