International EB Awareness Week

For those who don’t know (and I’m sure there are lots), EB stands for Epidermolysis Bullosa which is a rare genetic skin disease wherein the slightest friction can cause the skin to peel.  I didn’t know of this disease until I “met” Hillary Brown.  We talked about her organization, HelpingHow and their thrust to help kids with EB in Vietnam get the healthcare they need.

Hillary is here now in HCMC looking over the activities of HelpingHow in HCMC.  I haven’t met met her yet but from our 2 hour long phone interview, I know she is passionate about her work and helping others.

EB’s 14-year old spokesperson, Huy is receiving his first set of wheels tomorrow at the Saigon Zoo.  So volunteers and friends are all coming together to celebrate this happy occasion as Huy can finally get out of the house to have some fun!  Incidentally, it’s the International EB Awareness Week on October 25-31.

Here’s Hillary and Huy in a video:

Reposting my earlier article in WordHCMC on Helping HOW:

When volunteering wasn’t enough, Hillary Brown took on the challenge of starting her own charity. Words by Lyra Dacio.

“I never was a good expat wife,” Hillary Brown, co-founder and executive director of Helping Orphans Worldwide, says matter-of-factly. She didn’t want to be a conventional stay-at-home spouse. In the 14 years she’s been globetrotting wherever her husband’s work takes her, from Eastern Europe and Israel to Southeast Asia, she always found an orphanage to volunteer at.

But when she saw firsthand the negligence, malpractice and even corruption of some charitable organisations she decided to stop volunteering altogether. In 2007, the owner of the company her husband was working for trusted her with funds to start her own organisation.

However, prior to setting up her own charity, Hillary needed to learn the operation behind it so she got in touch with Father Shay Cullen. Fr Shay has more than 30 years of experience working with the Peoples’ Recovery Empowerment and Development Assistance Inc. (PREDA) Foundation (www.preda.org) in the Philippines, whose main goal is to save children from abuse, prison and exploitation. He urged Hillary to use her passion and ability to make a change in places where there is no “Fr Shay”.

Why Vietnam?

An Irish friend working and living here told her that Vietnam may be the right place. “I went to check it out and was hooked on the culture, the children, the elderly and the people in need,” Hillary explains.

And so, in 2008, Helping Orphans Worldwide (HOW) began its work in Vietnam. “I was also in love with the way people who could help and had nothing really wanted to help; and those who had less, gave more,” she adds.

In 2010, HOW, in conjunction with the Starfish Program from the Philippines, helped several children receive everything from heart surgery, cleft palate and jaw surgery to omphalocele surgery, plus much more.

Another priority of the Starfish Program and the centerpiece of HOW’s operations is Epidermolysis Bullosa (EB) Awareness. When asked why they focus on this rare genetic skin disease, Hillary explains that “there is a lot going on about EB all over the world. Lots of research is being done, and in Vietnam there are prevalent cases in the north. However, cases in the south are misdiagnosed.”

Those afflicted with this disorder have delicate skin that can easily break. Some can’t even bear to wear clothes as the mildest friction can rip their skin. Severe forms can lead to disfigurement, disability, carcinoma and even death when left untreated.

14-year-old Huy suffers from EB and needs proper wound care daily. He wants “to become a monk and to find a cure for this disease so that other children won’t have to go through this” when asked about his dream.

Huy is only one of many children with EB in southern Vietnam. “We don’t know if there are more because doctors in Vietnam are not yet well-informed to diagnose it. The sad thing is that this is a genetic disorder — meaning if a family has a child with EB, the other children in the family can have this disease as well,” Hillary explains.

HOW is working to provide wound care treatment at an affordable price to children and is seeking partnerships with pharmacies to provide the medicines needed. It costs VND10.5 million to diagnose which type of EB a patient is afflicted with and these tests must be sent to France or Australia as none are available in Vietnam. An additional VND5.25 million a month is needed for wound treatment. They are also in the process of setting up support groups among families dealing with EB to help one another.

Seeing it Through

In addition to its main goal, the organisation also supports the Educational Center for Disabled Children in District 4, which currently cares for and provides vocational training for 86 disabled children. They have been providing the basic needs of the centre and are becoming involved in its arts and recreational activities.

However, Hillary is fully aware that the current projects require continuous love, care, guidance and funding before they can become self sustaining.

“[Vietnam] feels like home to me, and I find that I am able to somehow get through the muck to find help for the children,” she says. “The projects have gotten to a point where I feel that we need to see things through and not do things halfway.”

—-
If you’re interested to volunteer, please visit www.helpinghow.com.

 

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7 Responses to International EB Awareness Week

  1. helpinghow says:

    Lyra, you are such a sweet heart! Thank you so much for your support and your lovely spirit!!! We are so grateful for you spreading the word of EB International Awareness for all of the children living with EB and who have no idea about EB!! HOW will be working with Children’s Hospital 2 to call back all of the children born in HCMC who were not diagnosed with EB before but have the symptoms, and we will not only train the families how to care for them, we will be giving free EB wound care kits as well as a DVD translated into Vietnamese to help them. We will be there for these families and caregivers to orphaned children in HCMC. Hopefully when we grow we will be able to help children all over Vietnam (but we are only licensed to work in HCMC at this time). We are able to put together a very good program and then pass on the education and love! Thank you again!!! WITH BIG HUGE HUGS AND LOVE XOXOXO Hillary Brown

    • Lyra says:

      You are very much welcome Hillary! You do awesome works! This is just my small way of helping out. 🙂

      • helpinghow says:

        IT’S HUGE!!! ALSO THE VN VERSION IS INCORRECT SO AT THE VERY MOMENT WE ARE GETTING IT CORRECTED. IT WAS TRANSLATED WRONG 😉 Thank goodness for our great Doctors that can help us to catch these things before it’s too later! The English Version is perfect:) The Word is going to print it for us for EB International Awareness Week!!! We are so very happy to have such wonderful and kind people like you, Bao, Nick and so many others to help us to spread the word!! Thanks again Lyra!!! Big hugs to you and your family xoxo
        Love Hillary

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