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


Sunday, 26 April 2015

Meeting our Eb Families

Wow where do I start?! Today was a whirl wind of time & emotions. But 7 Eb children & their families came to see us, chat and give advice. They all looked so amazing!! Their families have been doing a fantastic job, I had to keep telling them this because they really needed to know that!!
They each had different issues, one was very thick nails which looked ready to fall off and his foot was so painful with wounds. I assisted in dressing his foot in Mepilex & Tubifast from the donations. He cried so much but it was because I had scissors and he thought I was going to cut him... This made me tear up. I had to constantly smile and reassure him I wasn't here to hurt him. 
I noticed a little later, he was walking much better and actually smiled at me which was so amazing!!!
Another little guy had severe wounds on his tummy area, his father was concerned. Upon checking him his jeans were far too tight and he also had underwear that was digging in his skin so much..... I asked him if he wished to try my special clothes... Very unsure but he agreed. I took him with his father to a private room as he was very shy. 
After putting the skinnies on him, oh the smile across his face..... It would have lit up ANY room!!!!!! 
He said, in English, Thank You, Cool... And I even got a high 5! This totally made my day...
He even allowed me to bring him out and show everyone, all the time he was smiling. He spoke to everyone and said they made him feel good. This is what YOUR donations are doing right now. Allowing Eb children to feel good!!! 
Such a darling. He followed me everywhere smiling after this! 
We gave out wound care, showed them where & how to use each piece. 
Everyone went home with arms full which was just beautiful. They asked many questions about teeth, mouth blisters, diet, but from how their butterflies look they are already doing an amazing job. With YOUR wound care donations they will be just fine!! They now know when they need more supplies they can just ask Dr Phuc who is part of Group Faith and we will try to ensure they have all they need. So please please keep these little ones in your thoughts before you choose to throw away unwanted supplies. We are their lifeline!!! 
Between Group Faith, Helping Orphans Worldwide and The Butterfly Network Here2Help their future is very bright at the moment. Please help us to help them x

I am waiting on many photos from today so will share as soon as I get them. 8am Tmro I will leave Hai Phong and head for an Orphange near Hanoi. Meeting an orphaned little girl with Eb. 
So please keep following and thank you for all your support, love and kindness for the worldwide Eb Community. 
Much love xx

Saturday, 25 April 2015

Day 2 Vietnam..

So today was a real mix of emotions. We were taken to a special festival and was welcomed so much... The music & singing was just so beautiful. Was a great honour to be invited along. Thank you! X
We then visited a temple which is a mark of respect for a king. Such delicate art work surrounded the area. 
This amazing man, khoa scar took us to visit all these amazing places an talked about his work with group faith. Inspirational is not the word to describe this man... He is a super hero!! I will go in to detail about his work when I get home. 

We also visited a young lady, her story ripped my heart to pieces but seeing her alive and well was just beautiful. Ms Han. I will properly share you her story too once home. 

Once back at the hotel we were told a visitor was coming to meet with us as they didn't live far....
Look who came...
This gorgeous little mans name is Tom, he has Eb and I just adored spending time with him, his mum and talked much about his skin and how she copes. Many thanks were given to pass to you all for the wound care donations she receives. He will come back tomorrow when a group of Eb children & families come to talk to us and have us meet their little butterfly. 

Right now I must sleep but will try to blog much more Tmro. Love lots! Xx

Friday, 24 April 2015

Arrived in Vietnam

After a very long journey to get here, I finally arrived in hai phong, Vietnam. 

Meeting Hillary Brown (Helping Orphans Worldwide, HOW) at the airport. 
And Mai Ha Quyen too. She is such a darling and will be my interpreter for the trip. 
On arrival at the hotel we were met by the Doctor, phuc & some of the faith group. Their welcome of us was amazing!!! Can not thank them enough for the flowers and kindness.

Was such an honour to meet them all and more so the doctor as his wife just have birth to twins that morning!! A healthy boy & girl. Congratulations to them both.

Last night jet lag was so bad but we had to fight through it. Went for a walk as my leg is swollen from flying so much. Myself & Hillary went to find food. Sat with a group at an outside cafe, such lovely welcoming people here!! By 10pm I had to sleep, I felt like I was floating!!! Peaceful nights rest and ready for today...

Much love x

Tuesday, 21 April 2015

All packed...

Around 36 hours until I leave for Vietnam and I have finally finished packing! That has been the worst bit, making sure I got as much wound care in as possible! 30kg allowance isn't very much but I certainly managed it.... 
Inside is the following:
20x50 - 33
20x21 - 11
15x17 - 24
15x16 - 20
11x20 - 5
10x12 - 26
10x11 - 34

20x50 - 22
15x20 - 11

15x15 - 11
10x10 - 6

13x20 - 26

4x24" - 30

Finger - 21

Heel - 2

Non adhesive- 
15x15 - 3

Soft hold
10x10 - 9
5x7 - 5

7.5x7.5 - 20
10x10 - 12
12.5x12.5 - 170

20x32 - 69
12x15 - 40
8x10 - 100

20x30 - 120

Small packs - 111

Approx 2000

Yellow - 80mtr
Blue - 60mtr
Green - 53mtr
Red - 67mtr

And many many specialised clothing...

Since I am a terrible flyer & suffer severe panic attacks, I please ask that you spare a thought for me as this will be the first time I fly alone.... And a 20 hour journey!!
Please also keep the sweet Eb families I am about to meet in your thoughts! After 2 years of providing wound care, I finally get to hug parents and see how each item has changed their child's life...

"You don't know how strong you are until you have no alternative"

Much love from my family to yours x

Monday, 20 April 2015

UK to Vietnam..

Monday morning & the sun is shining already. Its the last rest day i will get before jetting off on the long journey to Vietnam on Thursday 23rd April!!! Have the nerves kicked in?! I will have to say yes... Unsure why, but there are definitely butterflies fluttering around in my tummy. Could be excitement too as i am not only there with a fabulous friend, Hillary Brown & the team of but i am also meeting some of the sweetest little ones who have benefited from our 'Wound Care Program' at The Butterfly Network Here2Help.

I am very much hoping to have internet whilst i am there so i can blog daily about the journey, life with Eb in Vietnam and allow you to meet some new friends of ours. But if something goes wrong with this plan i will share a full story when i return.

Tomorrow i will finish packing the 30kg of wound care supplies i am taking, pray my visa arrives and spend some quality time with my family. This is what i managed so far.... And a 4th layer to added...
Layer 1

Layer 2

Layer 3

Wishing you a fabulous Monday



Thursday, 9 April 2015

Jonny Kennedy Partnership

Yesterday morning the sun was shining as i hit the motorway, driving 3 hours to finally meet two inspirational people. Eric Duffield, founder of and Jonny's mum, Edna Kennedy.
The shop was amazing and filled with buzz by the locals in shopping, dont think i had ever witnessed this kind of environment inside a charity shop before. Staff so happy to chat & help everyone, laughter between them all. A truly lovely place to be. If your ever in Newcastle, NE26 1DG be sure to make a visit..

Meeting Eric was fabulous! We met via the Eb community on Facebook a few years ago and back in January 2015 we joined forces. JKNE & TBN as a team. Could have sat there for days chatting! Was like old friends meeting up for coffee. Such an inspirational man!
The work they do on a day to day basis in that shop & behind the scenes etc for the Eb community is mind blowing. NO paid staff, ALL volunteers working from their hearts and with transparency. Im proud to call them friends and im proud to have partnered with such a caring, honest charity.

Last but not least, Edna. An amazing women! Often people say they feel like they know a person, i sure got that feeling. We talked a lot about the documentary "The boy whose skin fell off" & Jonnys life. I obviously had a million questions but could only remember a few when i came to ask..
Jonny did not have a Gtube, he ate normal foods but couldnt eat meat. Edna blended food to make shakes for him. He never mentioned food during the documentary, hence why i was so interested in this answer.
We talked about her life, her horse riding days. A truly inspirational women! So grateful she took the time to come and meet with me.
Plans have been talked about for 2016, which will be a HUGE celebration of 10years in service for JKNE.
All details will be posted here, websites etc so be sure not to miss out...

Much love to all x

 Registered Charity No. 1119765