Sunday, 10 May 2015

Adoption ~ Butterfly Princess

Adoption ~ Butterfly Princess

In April 2015 I visited Vietnam on an Epidermolysis Bullosa (Eb) trip with Registered Vietnamese Charity Helping Orphans Worldwide (HOW) to assist with two groups of children living with Eb.

What is Eb?
Epidermolysis Bullosa (Eb) is a rare genetic skin condition which means the anchors which bind skin layers together are missing. Mainly presented at birth with tiny limbs having massive open flesh wounds that can often take months if not years to heal. Most parents do not know they have the defected gene until their baby is born with this condition. There are 4 types of Eb, and many subtypes, each depend on which skin layer is effected. A biopsy will diagnose this. Life expectancy is around 36yrs (in Recessive Dystrophic Eb) and infancy (in Junctional Herlitz).

For the rest of their lives its a routine of severe pain, bathing, skin care, lancing blisters, pain medication and specialized bandages (for those who are lucky enough to have access to those supplies).

First group were in Hai Phong, 8 children. I met with them at a function room, spoke to each family individually giving advice and showing them how to use the specialised dressing for Eb. Second group was in Hanoi, 4 children. Again I spent a few hours giving advice and going over wound care, offering advice and tips how best to use.
I had brought with me 37kg of Eb wound care supplies that had been donated to my foundation The Butterfly Network Here2Help via a wound care program I run for Eb people around the world living in severe poverty.

During my visit I went to an orphanage where a little girl was living with Eb. I knew all about this little girl as Helping How had assisted with her after she was abandoned as a baby. So meeting her face to face finally was like a dream come true. My heart actually skipped a beat on seeing her! A sweet little girl, not very vocal but you could see her character immediately! Crazy but I had already made enquiries before I left the UK as to IF I could adopt her but had no replies. That did not put me off....

Spending those few hours with her, giving her a bath, tending to her wounds/blisters and teaching staff & volunteer's how to do a dressing change just made my whole year. We played together and the volunteer’s captured so many photo’s that I will forever treasure, oh that smile!! This little girl has completely stolen my heart.
Watching her wave as I left the orphanage was so difficult but my mind was already made up. Whispering to her “Tam, I will be back for you”....I kissed her cheek and left.

It was a unanimous vote in my home..... Not that it was needed but ”We wish to be her forever family”, loving her unconditionally and ensuring her condition is treated correctly here in the UK.

But it comes at a cost... We need help with fund raising. This is where you guys come in..... I hope!
Will you help us bring our princess home?!

Please know we will be holding fund raisers as a family too, to raise such a HUGE amount

The total cost has not yet been revealed to us but we are guessing in the region of approx £15,000 GBP

This will include:

Home Study (UK),
House check (UK),
Police checks (UK),
Vietnamese Lawyer (Vietnam),
Cost for filing for adoption (Vietnam),
Translation of documents (UK & Vietnam),
Flights (cheapest),
Accommodation for possibly 3 weeks stay (I am no princess & will stay in the cheapest),
Visa to bring her home,
Return flights including Tam’s (cheapest)

We are aware this is a HUGE ask but our income doesn’t allow for these kind of savings.....

Will you help an orphan become part of a forever loving family?!

ʚϊɞ Thank you for taking the time to read ʚϊɞ

Wednesday, 6 May 2015


Having been home from Vietnam for one week i thought it time to explain MY feelings. Its been difficult to process my emotions but i know one thing for sure....Life is Precious!!!

Cliche i know, but when people say a journey has changed them... Its true! I think differently, I see things in a new light, but my heart still hurts and desperately wants to do more...

Im not a great flyer, my kids roll their eyes and often make jokes about noises as we are jetting down the run way to take off. Making me feel sick, but all the while knowing its their way of lightening a stressful moment for me. Oh, yeh but mainly cos they find it so funny too lol!
The strange thing was on my journey home, sat on that flight at Hanoi... I felt nothing! No nerves, no panic attack, no wanting to grip the hell out of the arm rests like normal (or the old guy sat next to me). Unsure why but i felt completely numb, taking off down the run way and lifting off into the clouds. Absolutely nothing.. Did i leave my heart in Vietnam?! Maybe....


Spending time with Hillary & Quyen was amazing, they are both such cute ladies with hearts of gold. You really should check out ALL of the program's runs. Take a peep! Amazing work being done in many forms with the biggest of impacts for those in need!

My trip was all about Epidermolysis Bullosa (Eb) but we took a little time out to meet with other people who have coped with the worst imaginable fates. Ms Han for example, she was 8 months pregnant and got hit by a truck about 2 years ago. Losing her precious baby AND losing her leg right up to her hip...

We were welcomed into their home, meeting all the family. Such beautiful, kind hearted people! Ms Han showed me all her wounds she had sustained in the accident. I often had to just stop speaking..... even in the middle of a sentence....Chocking up, tears in my eyes at how brave this women was. Christ, i now felt a MASSIVE sense of guilt. I whinge for the smallest things, and make drama over things i know WILL be fixed. Here was this teeny tiny women, smiling, offering us tea and food, whilst telling us about her life & dreams for the future. Not a religious person but i pray good things come to this women..


Group Faith has around 30 members, all volunteers. 

Group Faith are an amazing group and they heard about Ms Han's accident and set about helping. In one week they raised enough money to get her a bionic leg & rehab, which you can see in the photo's. When i met her, she had been walking for just 1 week...... Such a privilege to meet with her, the family and listen to her words. Again please remember just how LIFE IS PRECIOUS!!!!

Khoa Sẹo

Khoa is a journalist and a member of Group Faith. He totally went out of his way to take us to meet with Ms Han and visit some temples. His kindness shines like the sun!! A wonderful man, sharing his involvement with the group, and his life. Most of the photo's you see, he took. Thank you Khoa.

Phuc Tien Nguyen

Phuc is an eye doctor that came across Eb a number of years ago. Educating himself so he was able to assist our Eb community in Vietnam. Greatness has come from his help!! All our donated wound care allocated for Vietnam goes to him & Group Faith who then distribute around the families based on needs. We as a team would be lost without him. Thank you Phuc for everything you do! 
Oh i should also congratulate you again on the birth of TWINS the day we arrived in Hai Phong.... but you still came out late at night to welcome us!


Im quite a private person normally, my life is kept behind closed doors and my work is usually done behind the scenes but since this trip, i feel the need to share more & more....

Epidermolysis Bullosa (Eb) has become part of my daily routine this last few years. Its such a great feeling to know even the smallest thing you do has made a massive impact on someone else. 

Most people think i just sit on Facebook and say 'hi' to a few families. So far from the truth!!

In 6 years i have educated myself on every single aspect of Eb from research to dressings. Im learning more & more everyday and if i cant answer a question...I seek an answer! Never have i left someone alone, struggling in a situation. Eb is a scary journey, but with support & love, hopefully it wont feel as bad. 

I created the EB Lounge(s) on Facebook so families from around the world were never alone. I have help from admins but i monitor them daily which is a hard task. On top of that, i am always searching out Wound Care donations to ensure our families around the world always have a monthly supply. Maintaining supplies, creating spread sheets so i know what we are short of and arranging shipping for each parcel i have packed.
The Butterfly Network Here2Help i run alone, for me its easier as the Wound Care Program is so complex. Can not afford mistakes as they can not be fixed once those parcels leave me. Its like a one chance scenario, one chance to get the wound care delivered to each family in the shortest amount of time!! 

Meeting some of the families who benefit from YOUR wound care donations has shown me just how important this program is. Each family was so grateful, holding my hand, hugging me etc.... Please know i accepted each one on YOUR behalf because YOU are the reason they get the supplies. 

 Please keep supporting the 'Wound Care Program', Changing lives together!!

Saturday, 2 May 2015

Tshirt Appeal

Had a busy day seeing the gorgeous Lauren today. Not only has she assisted to design this INSIDE OUT Tshirt, she even modeled it for us!!

You may order here:

£12.00 each & p+p (£3.00 Uk, £7.00 Int)
Small, Medium & Large available

All monies going to Jonnykennedynortheast Charity to support our Eb families around the world.

 Registered Charity No. 1119765

£12 buys YOU a Tshirt designed & modeled by my best friend Lauren Grace Simpson

Expensive?! Ok let me try this a different way....

£12 buys an Eb family living in severe poverty somewhere in the world ONE MONTHS wound care shipped to their home... Which enables them to care for their or their child(ren)'s skin with Epidermolysis Bullosa.

Still too expensive?! These families dont ask for holidays or help with Christmas gifts..... They simply want help to access supplies to keep their child alive. Life is all they wish for...

Please look inside your heart and help us to help them
100% of monies raised goes back to the Eb community around the world
‪#‎Volunteers‬ ‪#‎Charity‬ ‪#‎Eb‬ ‪#‎Ebstrong‬ ‪#‎HealEB‬

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