Wednesday, 29 April 2015

The Butterfly Network Here2Help in Vietnam

On the 25th April 2015 a special little visitor arrived at the hotel to meet with us, Tom, he has Rdeb. Having followed his story for a while on Facebook it was amazing to finally get to say Hello face to face. He looked so good and you could clearly see how his skin had been cared for. His mother is a strong and amazing women. She assists other families with their Eb children, and newborns she hears about, even whilst caring for her own Eb son, an older child and working. I have so much admiration for her. Such a pleasure to meet with them both.


On the 26th April, all the families from the Hai Phong area arrived to meet with The Butterfly Network Here2Help, Helping Orphans Worldwide (HOW) Dr Phuc & members of Group Faith. 7 families, 9 Eb children all under one roof. Before the seminar began, i watched them all chatting and talking about each others Eb child. It was lovely to watch, this is a very strong group!
I then set about sitting with each family and discussing any problems or issues they wanted help with. Showing each how to use the dressings, how to not waste anything, all whilst congratulating them on doing such an amazing job with their child(ren). Some of the children were more severe cases so ‘Skinnies’ specialised clothing was given and shown how to put on. 

Each family was given a large amount of dressings to take home and the rest was given to Dr Phuc. They now know they can turn to Dr Phuc when supplies run low. 
Such a blessing!!
Cries of fear soon changed to smiles, laughter and many high 5’s, children walking much better and feeling comfortable. Parents stressed faces changed to smiles, relaxed and many hugs of thanks.
This is what YOUR wound care donations are doing, changing lives! Nothing is more special than being able to see this with my own eyes. 
Giving hope for a better future. 




On the 28th April we met very early with 4 Eb families. The children were grumpy and tired but very well behaved. So grateful that they all came together to meet with us. Again a strong group of parents, all assisting each other. I sat with each family chatting and offering advice on how best to use supplies without wasting anything. They each received a large bag of wound care, some were given ‘Skinnies’ but they all left with smiles! An amazing trip meeting amazing people. I will hold them all in my heart forever!

Such sweet angels


The last little guy you see in the green & yellow Tshirt arrived late as he had been in the hospital over night. On his arrival he was very upset as was his mother. She showed me his penis which was severely wounded and he was unable to urinate. The doctors in Vietnam did not know how to treat him. In a frantic call to Tom's mother in Hai Phong, she knew how to assist with this issue and would speak to her regarding this urgently. 

I felt completely useless at this point & quite emotional. On inspecting him further all i could see was mounds of dressings on his arms, hands & feet. Causing me HUGE confusion and the more i tried to investigate, the more the little guy screamed. Mum had cut open tubifast to use as bandage and he had some form of brown foam underneath........

 She pleaded for me to simply TELL her what to do but my heart was saying no, she had to SEE what to do. I placed my gloves on and he screamed even louder..... Terrified of the gloves, i chose to remove them. Slowly & begging him to allow me to check his arm (the brown foam). I eventually peeled it back to find an old wound which was quite red & sore but intact.

I cut a small piece of Mepilex to fit over the wound and showed him how i wasnt there to hurt him. I placed it on and his face changed...The screams became less & less

Only then did he allow me to remove the brown foam and bandages. I placed a small piece of Tubifast over the Mepilex to hold it in place. My heart was pounding out of my chest at this point but i knew he would feel comfort very soon. 
Within a few seconds this was his reaction....And look at his mums face too

That smile broke my heart & i was seriously fighting back the tears but had gained his trust now. The hand bandage was also removed and i made him a little glove from Tubifast which he also LOVED!!

A happy family makes a happy Sue!!!

Only when we were cleaning up the removed bandages did i then inspect closer.... The brown foam was in fact Mepilex. She had been washing it for over 2 months and putting it back on him so she didnt waste anything!!

 I walked out of that place in floods of tears, that i simply could not control. I am crying whilst typing this for you to read... 
No mother should ever have to 'need' to wash Mepilex

I gave her now a large bag full of wound care and made sure she knew that when they were running low she could call the Dr for more... 

PLEASE Please keep donations coming so this kind of thing is in the past



I want to personally thank Hillary Brown, All the volunteer team of Helping Orphans Worldwide (HOW), Dr Phuc & Group Faith for having me over to Vietnam. Showing such kindness and for making my trip such an amazing experience.
I also want to say a HUGE thank you to all the Eb children for allowing me to meet and look at them and the Eb parents for going out of your way to visit us. Great friendships were formed, making a better future for all.

ʚϊɞ blessings ʚϊɞ


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