Thursday, 9 April 2015

Jonny Kennedy

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

Sunday, 29 March 2015

Been a while....

Apologies for such a long gap in posting. Between charity work for Eb, own business, family life, a new grandson and running a home, life is rather busy!!

So much has happened so let me share in short some moments from the last 2 years....

  • We lost many Butterflies, young & old, which breaks your soul with each announcement.
  • The Butterfly Network Here2Help continued with a mission to supply those without wound care which has grown in strength over the last 2 years.
  • We made many new friends around the world.
  • A trip to Vietnam with an amazing charity is arranged to take wound care & meet some of the Eb babies/children who have received our help.
  • And last but not least, we partnered with an amazing registered UK charity JonnyKennedyNorthEast
Jonny Kennedy North East is a Registered Charity No. 1119765

 Will update in full asap. Thank you for being here in support of Eb families worldwide x

Saturday, 28 September 2013


Hiya everyone :) well I have posted in a couple of days so here what's happened in them days.

I went to college on Monday a bit tired and sore but nothing unusual there, on Tuesday it was my day off, got out of bed about 3:30pm :/ (it was my day off) when I eventually got out of bed I had a cup of tea and biscuits. On my second biscuit I ripped my throat, totally out of the blue, (eb works in mysterious ways!) my throat wasn't sore before which normally happens. I had this lump of skin and biscuit in my throat that wouldn't budge, I couldn't swallow my saliva I had to get rid of it in a tissue. I tried to swallow little bits and it was going down (good news) I had another cup of tea that was lukewarm because hot tea doesn't go well with a bad throat as my friend Jennifer told me. I sipped this tea must of had it about half an hour but it was going down, didn't eat or the rest of the day apart from packet of skips. On the Wednesday I had to stay off college as my throat was still bad, the lump of skin had gone and i could eat more but in little amounts, slow and steady :) I could still drink which was a really good sign.
On Thursday I went to college very tired and my chest and my neck were sore from my throat ripping, I can only describe it as being bruised if that makes sense, I didn't go in Friday as the pain was bad in my chest and neck. 

Today :) my chest is still sore but easing a bit my throat feels strained because when you eat you just chew an swallow with eb you have to make sure you've chewed it enough, so it's small enough to go down, I do this when my throat is good so I have to chew ten times more to make it ten times smaller, as you swallow the food you tense up (hold your neck stiff) because the fear of choking every time you swallow you think am I going to choke - relax no I haven't. The muscles are over used. I am eating more and it getting better but still taking it slow don't want to rip it again as it's healing, it's very sensitive when it's healing, soo I'm taking it slowwww! I've just changed my knee dressing as it was sore, turns out it's better than last time :/ but a piece of the dressing has made a dip in my skin so that's sore and stiff, I've had a blister on the top of my knee so that's sore too! I've just popped a blister in my mouth which was very painful! Every minute of the day we have eb, something comes, or gets in the way of me doing stuff, but 'patch up and move on' I say :)

Hope everyone is well xxxxxx