Thanks for taking the time to visit my JustGiving page.

Only days after his birth in Oct 2013 I had to accept Ruaridh had inherited EB simplex, a hard fact to accept for a gran! Christina, my daughter and Ruaridh's mum has learned to cope with this awful condition. We had to teach ourselves, nothing nice about lancing blisters on my baby and worrying if it would heal quickly or develop an infection!

We dicovered DEBRA when Christina was 15 years old and I have to say they were a Godsend.  Helping us to uderstand and deal with problems arising in her life, changing the antiquated treatments I'd been using on her and introducing new dressings to aid a quicker healing process!

Christina now has a the difficult task of watching her baby grow up with this awful affliction and dealing with that!

Ultimatley we can only hope that with DEBRA's research that EB will soon become a bad memory! 

Christmas 2015

Exciting developments have been made in 2015, research into gene therapy is progressing enough that trials are being implemented. 

I pray they work as it is another step toward a cure for Ruaridh! 

Ruaridh was properly diagnosed with EB last month, we knew he had EB but needed it to be confirmed and type identified!  Having to have blood drawn proved to be very traumatising for my little soldier! He has same type as his mum! Only good thing to come of his trauma is that they can now join into research schemes as they develop. 

Chrstmas 2016

Ruaridh is continuing development... he has quickly learned to tell mum and dad his feet are fine when they are clearly not as he was walking tentativly.  Conversation last week:-

Mummy...... "Ruaridh are your feet sore?" 

Ruaridh..."nope"

Mummy...." Why are you walking funny?"

Ruaridh....." I am being a penguin"

Very funny little man we all thought, what a quick answer for a 3 year old. Truth was, daddy had to burst a couple of blisters before bedding him down for the night extremely upset with the experience. It's tough love having to lance his feet and hear him upset everyone in house gets upset hearing him cry especially his sister, Amber. It is horrid to listen to takes me back to Christina when she was younger, I was so glad when she took over the task of lancing her own blisters and I would comfort her afterwards.                                                                                             Debra research is progressing and different trials are being done here and in America with some good results. I still yearn for the day when they can say EB is no more!

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CHRISTMAS 2017

Sorry folks I missed updating this year as my mum was very unwell and landed in hospital for Christmas and a short time after New year also!  

Missed donation also but will make up for it! 

August 2017

Ruairidh started school, this brought great concerns! His feet were badly blistered over the hot spell we had this summer! 

Now being at school and unable to control temperatures in class and the amount of running around at play, blister bursting was a daily business sometimes twice daily! 

School have been fantastic, taking on some responsibility with bursting, and setting some limits to his running around by keeping him indoors with som company! They keep a diary on what they do regards his feet! We have made good use of “cool mats” at home and in school and they certainly help! 

Keeping his blisters under control is tough..... how do you tell a 5year old he can’t run around? Ruairidh just wants to be like the other kids in the play ground playing chases and football.. and he does..and pays the consequences! 

Been one of the toughest years for Christina having to rely on others to look after Ruairidh at school and adjusting to him being more independent from her for large parts if the day!  She has managed, but was still bursting blisters in November, despite the colder weather Ruairidh just wants to play with others and he blisters! 

Blisters will be ongoing with Ruaridh, in time he will learn to reseverve his play to prevent excessive blistering..  but for now he is just being a 5year old! 

Will put donations for this year and last as soon as I get time to! 

Merry 2018 Christmas to you all 

Donation of £275 made for contributions 2019 and 2020... doing my best to keep up and keep awareness for this cause in the hope for a cure fir Christina and Ruaridh and all eb sufferers.

Thankyou to everyone for their  continued support 

Mary