HOW: Huy's Journey July 2012

HOW is a registered 501(c)3 non-profit organization based in the USA, whose staff consists of all volunteers. Its mission is to provide hope and care to neglected, abandoned, and orphaned children in deprived areas of the world with a specific focus on VietNam.

We wanted to give an update on our little sweet friend Huy's journey living with EB (Epidermolysis Bullosa) which  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.

Huy has been Helping Orphans Worldwide, HOW's EB representative and spokesperson for Vietnam and for International EB Awareness Week and EB Awareness around the world. Huy has been a friend of HOW now for several years and he is one tough cookie as well as a very smart young guy with a great sense of humor and a beautiful heart!

Huy has been very sick, on top of his EB...he has had a very high fever, an infection throughout his body and has not been able to eat or take any nutritional supplements for the past week. Helping Orphans Worldwide, HOW has made arrangements for Huy to see the doctor who recommended he go right away to get two blood transfusions, as one is not enough and this process must happen slow and easy as to now shock his body.

Huy's family insists on having Huy go to the hospital on a motorbike between his mom and dad on a motorbike, no matter how hard HOW tries to get them to allow us to put him in a taxi cab. He then is put in a very uncomfortable wheelchair and waits for the doctors. HOW is working on getting a special Wheelchair donated but we are finding out things that we had no clue about like the size of the seat, the cushioning and comfort for him to lay back a bit, how we will keep him from falling out as he can't have straps to hold him in... this is another project on it's own! One we are more then happy to tackle with the help of other great volunteers and therapists, designers and a great company in Vietnam who is trying very hard to help us to accomodate Huy and keep him comfortable for these occasions as well as getting out of his hammock and seeing where he lives!

Finally Huy has been admitted and his doctor is very careful and loving, she inserts the tube into his head as he has no veins in his arms or really anywhere else that can handle the blood flow. Huy is so brave he knows the drill and knows that what is happening will help him so he is brave and remains very still until she has finished and the blood is being prepared. HOW's volunteer and board member Kerri Galligan sits with his family and Mr. Dat as he makes some jokes and tries to comfort everyone around him and assure them that he is OK and not to worry, this will be worth the trouble. He is also thanking everyone for being so helpful! What a love bug he is and a hero!

Helping Orphans Worldwide, HOW has purchased a few 900 gram cans of nutritional support for Huy while in the hospital as they do not provide this and he has hd no vitamins to help repair his immune system. We will continue to supply this and insist he drinks it 4 to 5 times a day. He loves his coffee, chocolate and rice and we are having a hard time making sure he gets nutritional support so we consel his family. They want to make him happy so Hillary has been on the phoe with an interpreter to tell him it will make her very happy if he drinks this 4 to 5 times a day and because he is so sweet the "gult" worked ;) Sometimes one just has to do what one has to do to get one to get healthy. We bought him chocolate and Strawberry to help. He told Hillary on the phone that he will drink it and he decided that he likes it now so not to worry he will keep his promise. Funny funny guy!


After the first transfusion Huy and his family are happy and Huy is already feeling better. He knows that tomorrow he will have one more and then he will be on his way. Huy's mom is on the left, his Aunt on his right and his dad behind and Kerri is taking photos because we have told Huy that everyone wants to know that he is getting treatments and feeling better and he has a lot of people who care about him so of coure... BIG SMILE!  The whole family stays with him for two nights at the hospital to bring comfort to him and they worry of course, we all worry. His fever begins to go down and he is now getting antibiotics for his infection. He is getting hungry... YESSSS!!!

AND LOOK AT WHAT HE WANTED TO EAT!!! He wanted chicken and rice and VEGETABLES... OH GLORY DAYS!!! He also drank 4 scoops of the nutritional drink!!! He laughs when we all got excited and reminded us he is not 2 years old and why are we so excited!! We told him we know he is not 2 years old but he could be 45 years old and we would still should with glee when he eats because it means he is feeling better! He is so cheeky sometimes hahah WE LOVE THAT ABOUT HIM!!

So now Huy is home, feeling better and taking it easy. He is drinking his drinks for nutrition, eating healthier and will have to go through this one more time in June 2012 ... meanwhile he will continue to receive his 4 to 5 hour wound care treatments daily which are painful and horrific but he knows when they are done ... he will have some time to rest, while we all wait for a cure.

Huy reminds us all daily, hourly, every moment what it means to be a hero!!!

Thank you for all of our help and love for Huy and for following his story!

For donations for Helping Orphans Worldwide, HOW's EB program please visit:   http://www.tfishfund.org/how.html

Warm regards,

Hillary Brown