ʚϊɞ Needs help ʚϊɞ

Memphis baby fighting for life - JEB 

Meet little Anna Leigh, she has been born with the devastating skin condition Epidermolysis Bullosa (EB). Anna has the worse type ~ Junctional Herlitz (JEB H)

Please open the link and if your able to help with a donation or letters to your congress please do this and fast...Please please please do something, anything!!

You can make a tax deductible donation to help Anna Leigh in her fight against JEB, just visit the following website:
http://patients.transplants.org/faf/donorReg/donorPledge.asp?ievent=485635&supid=353687107
http://www.transplants.org/

As a community we CAN'T lose another baby......We have already laid to rest 5 butterflies in the last 3 months.

#WeNeedACureNow

 Anna Leigh's first time wearing clothes

Meet my crew :)

 Dannielle, my eldest daughter. Such a handful and after last nights fiasco she is grounded indefinatly lol. We can only bring them up at our best ability and hope that they take the correct path. For some reason she keeps taking back roads?!?!

 My girls & me, they are completely my life!! Everything i do, i do for them. In fact im starting to feel quite old looking at this photo lol...But anyway this is my crew :)

Now this little angel, god you would all love her to bits. She is funny, cute, loving and such a pleasure to parent.....Well so far lol. My bubs!!

Both of my girls are profoundly deaf for those who didnt know, deaf since birth due to a dominant gene passed on by their father. Most people say... Awwwww or what a shame cos they are so pretty...Look at it this way, they know no different so for them its normal. Both have Cochlear Implants which do help to an extent but they are just normal kids who want to be treated normal.
So glad i was chosen to be their momma!!

Much love x

Oooo an amazing women you MUST meet..

Another quick post :)

Jamie's promotional poster

Jamie Hartley
Please view her website, she is absolutely amazing!!
Her art work is outstanding and as you read her story you will learn why she is on my list of HERO's!!

Jamie preforming

Been a while...

Been a busy few weeks so want to quickly catch you up on a few things.
The Spring ball was an amazing evening raising funds in aid of DebRA UK

Heavy hearted as little Chloe was laid to rest today after she lost her battle with EB, Her parents & family are deep in my heart & thoughts.
http://www.jebchloe.blogspot.co.uk/

Chloe is our 5th baby we know about passing in 2012 and its heartbreaking, its like grieving for your own family instead of someone who you never got the chance to meet.... surely a CURE is in sight?!?!
Im not gonna give up fighting for this, will you join our "Butterfly Army"?
https://twitter.com/#!/SueAltinkeser
http://pinterest.com/suealtinkeser/awareness-for-eb/
www.debra.org.uk
www.debra.org
www.puckfund.org
http://thebutterflyfund.org/

Please educate yourselves and speak to someone about Epidermolysis Bullosa ~ EB. The more people that know about this condition the closer we get to funds for this much needed cure.

Much love to all x

one week and counting....

Its officially 1 week to go for the Spring Ball in aid of Debra. Everything is coming along nicely and still getting alot of suprises each day which make it all worth while (you will see on the night). Not going to be around much all week but know that everything i do is for awareness and to help get us a step closer to that CURE!!

Have a good weekend...

Spring Ball

Someone stole my heart...

Meet Rhys, this little dude stole my heart the second i lay my eyes on him. Not cause he is neck to toe in bandages, not cause he suffers so badly from Epidermolysis Bullosa (EB) But simply he is just so damn cute!!! A typical little 6 year old with a cheeky attitude to life we all should adopt, this world would be a better place. Rhys has a severe form of RDEB which means he cant do what other 6year olds do. His skin blisters and tears at the slightest touch, but that doesnt stop him from forcing me to play football (and let him cheat of course).  You will hear lots about Rhys and his family as my blog grows......