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.
What seems so simple has taken 8 months of a VILLAGE OF HELP! EB DVD translation…
Oh where to begin? Helping Orphan's Worldwide (HOW) Inc. has been involved 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.
It has been almost two years now since we learned about EB, but we continue to educate ourselves and the nurses and doctors as well as the families in HCMC Vietnam. We have all been overwhelmed and have been trying to figure out how in the world we can get the families some affordable help as well as a better understanding of EB Wound Care.
We have had so many wonderful people helping us, from DebRA , to Brightsky Australia, to Dr.’s and Nurses from around the world not only to come out and provide training but also donations of wound care materials, and the list goes on and on and on!
We were given a DVD that shows wound care treatment and explains exactly how to gently treat each wound and believe me this is a complicated and long drawn out process that is so overwhelming it makes one want to run and hide but there is no time for hiding and running, only jumping in and getting things done to give the children relief. This can take from 3 to 5 hours DAILY and is painful for the children but will help to save their life and give them comfort and healing ability if done correctly.
We decided to translate this DVD and have it voiced over in Vietnamese. Oh that sounded so simple and of course what needed to be done, of course!! 8 months ago we started to try to get just get the words translated as they were being said. This was much easier said then done! Dr. Duyen Pham (HOW’s wonderful and dedicated board member and Medical Advisor, and her lovely parents Mr. & Mrs. Hai Pham in California worked for hours to make sure to transcribe the exact words, at the exact time they were being said, and this took days of hard and tedious work! Ok we thought, great… now we just need to have someone do the voice over… not a big deal you say??? Ohhhh boy, this was another process of finding someone who was willing to help us and of course since we have no paid staff and we want all funds to go to the children we always ask for help with these very important projects.
In comes Nick Dang, our wonderful friend also in California, who we called and asked for help. Nick was eager to help and has seen HOW’s work first hand as he was in Vietnam with our team and he knows we are who we say we are and we work very hard to help. Nick met with Dr. Duyen and accepted the job to find not only a studio that would waive the fee but also a friend that would do the “voice over” for free, thank you Victor Nguyen and Anthoy Gil!!!
Ahhh but another snag!!! We sent Brightsky Australia, who made this DVD, a letter of “Thanks” before we began our work and were told that we needed to get the Australian Government to ok this as the DVD had a copy write, OF COURSE IT DOES… who would have thought?? Well most people would but not me, I had no clue! I called Brightsky, the lovely Louise Stevens, who immediately connected us to the wonderful Australian Government to ask for this permission. What amazing people they all are and we were given approval and instructions and assisted with such kindness and professionalism, snag complete… almost!!
Poor Nick Dang had to once again book the studio and the DVD was complete and wonderfully done before I left for Vietnam! Thrilled with DVD and usb in hand, “THIS IS GOLD” I thought to myself!! When I arrived to Vietnam I was told, we need to now translate the words that explain what each portion of the DVD is going to cover and in order to do this we need to edit and do some other technical things that I, of course have no clue how to do. This was going to cost us, but so far everything has been donated and it must be done right in order to help the families understand everything. In comes another angel, Phuc Luu who has been working tirelessly to not only get the translation correct, but to design a label for the DVD’s which will be given free to the families with children living with EB and HOW’s email address so we can be contacted if there is a need for EB wound care and also make sure that Brightsky is given full credit for all of the work they put into this DVD.
I know this is a long and tedious blog but, the reason is that there were so many people involved in something that seemed so simple and I wanted to make sure that all of the people who helped know their work has been so important and also maybe let people know that it really does take a village to help one child, and this wonderful group of many hands that have touched this DVD… starting with Milly Mezzei and Louise Stevens, is going to help many children and families to understand how to help their children.
Thanks to the Transparent Fish Fund, and Ping and Amy Chow Foundation we are able to continue on with the work that needs to be done once this DVD is complete. The work is only beginning and will be going on for a lifetime with any luck HOW can continue to help the care giver’s of the orphaned children living with EB as well as the families living in poverty or any family that speaks Vietnamese to understand just how complex this process is but also to know that HOW is here to help by bringing awareness, giving emotional support as well as wound care support and the best part is the families will now have the knowledge to help their children without going through the very painful process daily to go to the hospitals, they will also have each other!
We have been so lucky to have the support of the Vietnamese Government and Nhi Dong Hai hospital (Children's Hospital 2) to work so hard to help us to help the children and this has been a gift! We have had amazing help from FV hospital to help in so many ways. The amount of support has been amazing and we will continue to need support for EB and wound care treatment as well as our many other programs, but the “little project” has taught us all that nothing is easy and we are forever grateful to all of the many people who have helped with this powerful and educational DVD! We will have this up onhttp://www.youtube.com/helpinghow shortly for all to share if needed.
Holy moly… I know I forgot to mention many people because again, 8 months and so much has gone on. I will never ASUME that anything is easy, but the work that has gone in to this project is GOLDEN, is LOVE, and is a very valuable gift that will keep on giving!! Now we move on to the next project, which is getting this information out to all that are in need!
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