Huy lives with EB which is (Epidermolysis Bullosa) is a rare genetic skin disease that causes the skin to be so fragile that even the slightest touch will separate the layers of the skin. The skin literally breaks, resulting in painful blisters and open wounds. A mother may never be able to hold her child tightly because the skin would peel off and bleed. Children with EB may never run or play as other children because even the slightest friction will cause them great pain.
You can read more about EB at Helping Orphans Worldwide, HOW's website page here: http://helpinghow.com/about/vietnam/children-living-with-eb-vietnam/
This is Quyen's blog about Huy's first day out with family, friends and not to visit the hosital. He has been confined to his room and hammock for 14 years. Huy is HOW's spokesperson for EB and at 14 he is very articulate, funny, amazing, brilliant and will steal your heart in 20 seconds! He is the best representative for EB Awareness and while he lives with the very paiful disorder which there is no cure for he bring light and education, laughter and hope to all who meet him!
My Saturday was so funny with little Huy and all of HOW’s volunteers at the zoo.
This was the first time I met Huy even though I have heard about him before. Huy and his parents were so excited with the trip because this was the first time Huy went out side and also with a lot of people.
I used to search information about EB and EB patients before but when I met Huy, I actually saw how he has been suffering, how amazing and strong he has had to be and IS. Huy always smiles with everyone, and his soft voice, I do not know how to describe, and it’s so cute. Believe me, if you guys meet him once, listen to his voice and what he talks about, you will understand what I mean.
Huy was very interested in controlling the remote control plane toy like any kid would be, you had to look at his face when seeing the plane take off, you would know how happy he was.
Like all little boy, Huy loves ice cream and hotdogs. Even though it was a little bit difficult for him to eat by himself, Huy did it well with help from his beloved mother, a great mom who’s always by his side.
All the volunteers loved him so much, they each talked to him, told him about the animals, asked him about his favorite food, his hobbies and so on. Huy loved talking with us and I was so touched me when remembered my name although I just told him once and there was a lot of other volunteers talking to him. He is such an adorable little boy and he’s very smart and has a great sense of humor. Huy loved the animals and wanted to go around to see them all.
Unfortunately, the weather turned quickly to heavy rain so Huy could not see as much as he wanted but it was totally fine, we had a funny time together. I am glad it rain though because Huy has never seen rain, but only heard it as he has been confined to his hammock for the last 14 years except to go to the hospital. Thanks to Brett and Jane donating a new wheelchair through Helping Orphan's Worldwide (HOW) Inc. he could see rain and loved it!!
After being with Huy and his family, I just wonder why Huy has to suffer from EB (not to mention the other many children who suffer from this disorder), he deserves a normal life as other kids, running around, playing football, swimming with friends like any other clever little boy.
Huy is really a hero, fighting with his EB and always positive, smiling with anyone he meets and remembers everything you teach him. You have to meet him to see how amazing and strong he is. I am sure that you will love him much as we do now.
Huy is the perfect representative for Epidermolysis Bullosa (EB) and we are so proud to have him represent Vietnam for International EB Awareness Week (October 25-31, 2012)!
It was such a wonderful day for HOW’S volunteers and I am sure it was for Huy and his families too.
Please view photos for this blog, we think you will really enjoy them!
http://www.eastvillagers.org/hillary/albums/879 there are 59 photos here :)
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