Epidermolysis Bullosa And Us

I shared this, earlier today, over on Facebook.
Although, sometimes, it feels like no one reads my blog *echo… insert sounds of cricket chirping*
I thought that I would share it here for those that do visit.

Last night the Aussie TV program “The Project” shared a story about a family.
The story hit me hard.
It hit hard because it was a story that was very familiar.
It could have been our story.
You see their little girl was born with Epidermolysis Bullosa.
Almost 14 years ago our little girl was also born with Epidermolysis Bullosa.
The things they talk about, were things we went through.
The blisters their daughter is getting, our daughter had.

You can read the story HERE
and if you scroll to the bottom of the story you can watch the video from last night’s show
I wanted to share this so you know a little about this rare genetic condition.
I wanted to share this so you know a little more about what life is like for people with EB.
I wanted to share this so you might understand why I think the little everyday things matter
and why capturing life, through scrapbooking, is important.
I have often wondered about sharing more about EB and Megan’s story but haven’t shared much. 
One of the reasons I haven’t is because Yes she has EB but EB doesn’t have her.
Megan is one amazing kid and everyday I feel blessed to have her in my life.
And because I know Megan will read this… I love you Megan, lots!
PS I have scrapped some pages and shared them previously



Journaling “It’s a story that I have been waiting to tell, a story I need to tell, so please listen as I share…
I always knew, as you grew inside me, that something wasn’t quite right.
Just like I knew in my heart that you were going to be a girl, I knew that you were growing in a place that was keeping you safe.
We, Dave and I, had talked about possibilities and what ifs, so when you were born,
and we entered the world of EB, it was no huge shock and we took it in our stride.
Sure we cried and there were days where it was a struggle but we knew you were a blessing
and that loving you meant living with EB. I had to learn all I could about this disorder and I had to talk to others about it, still do!
So why did I need to tell you this? Because one day you might have kids of your own, I hope you do, and one day you might have a child of your own,
a child that needs that little more lovin’, loving that comes from a place in your heart that you didn’t know was there.
So I write this in hope that you realize you have the strength and the love to get through these challenges,
that there are people around you who will support you through the hard stuff and above all that, that you are loved VERY much and always have been!”
and also this page

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When it's raining you go inside...

no it didn't rain today, although the day started out like this





actually it started long before that. So yes when it rains it pours... and this morning at 5.45am Elizabeth was visited by Mr Hurley. A lovely vomit on her bedroom floor. I won't go into details but I now know that when she ate the grapes at lunchtime the day before, she didn't chew them... ok enough detail!!!


So the poor tyke didn't go to Kindergarten today but spent the day on the couch under a blanket with the telly on. She did spend sometime in the sun, while it was out, and this is how she spent it...


Lucy was her normal self...





They both went straight to sleep tonight, the other 2 didn't take that long either, so I'm hoping Mr Hurley doesn't come back for awhile!


Dave is on the plane back home. He rang just a little while ago, from his stopover in Melbourne. Not long till he is home.


Today the Project Scrap-Away challenge #7 was judged, I made it through to the next round, phew!! The challenge for #7 was to scrap a layout about a tragedy, so here is my page






Journaling “It’s a story that I have been waiting to tell, a story I need to tell, so please listen as I share… I always knew, as you grew inside me, that something wasn’t quite right. Just like I knew in my heart that you were going to be a girl, I knew that you were growing in a place that was keeping you safe. We, Dave and I, had talked about possibilities and what ifs, so when you were born, and we entered the world of EB, it was no huge shock and we took it in our stride. Sure we cried and there were days where it was a struggle but we knew you were a blessing and that loving you meant living with EB. I had to learn all I could about this disorder and I had to talk to others about it, still do! So why did I need to tell you this? Because one day you might have kids of your own, I hope you do, and one day you might have a child of your own, a child that needs that little more lovin’, loving that comes from a place in your heart that you didn’t know was there. So I write this in hope that you realize you have the strength and the love to get through these challenges, that there are people around you who will support you through the hard stuff and above all that, that you are loved VERY much and always have been!”

If you want to see all the entries for this round you can see them here.


I also scrapped this one but used the above as my entry.






Today I made the most of the not-running-around time and made my Scrap Mojo page. The challenge was to use lyrics from a song of your choice by the band 'The Ditty Bops' and doodling.
So I chose the song 'Wake Up' and created this :)

Watching Spicks and Specks last week there was a lady who had a green and brown top on, I loved the colour combo so have been wanting to give it a go on a page, viola!!
Ok now I have to thank the wonderful people that have stopped and left a comment on my 800th post. Thank you to all the visitors that my lil' ol' blog has had and thank you if you have ever left a comment. I am grateful to you all and the RAK winner for my 800th post is Diane! If you can email me your address details I will get a super dooper happy RAK flying through the postal system to you.
And finally one more little thing, I wrote an article about my Snap Happy Today album and its up over at Aussie Scrapbooking :)
Feel like there was something else I was going to share but can't think what now so that's all folks ;)

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Domestic Blitz

Just a quick note, last nights Domestic Blitz on telly it was about the Gibson Family. Six year old Joshua has Epidermolysis Bullosa (EB) which is what Megan has. If you didn't see the show you can see the rundown of it here and there is more info on EB found here or here.
There is no cure, it is genetic and the treatment for sufferers is simply to dress and care for the 'wounds' as the skin opens and to fight any infections that may occur.
Megan hasn't had and major blisters for a long time and hasn't had a bandage since she was 18 months old. Megan is just like a 'normal' kid and the doctors are often amazed when we share with them her story. We are still waiting on a 'name' for the EB that she has as the skin biopsies came back inconclusive but we know she has the Dystrophic type due to the scarring. We know what it is like to live day to day with these blisters and it isn't something that we will forget or ever take granted. We know that we are very blessed to have Megan and we want Megan to understand how blessed she is, that it is part of her and if she decides to have kids that this will be a part of the decision process that she will have to go through. Thankful to the Gibson family for opening their home and sharing their story and thankful to Channel 9 for highlighting this genetic disorder. Hoping more people become aware of what it is and that one day there will be more help for families touched by EB.

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