Goodnight, Sweet Dreams β€οΈ

Goodnight, Sweet Dreams β€οΈ

I never thought in a million years I’d be sitting in on a Sunday evening writing a blog about the passing of the sweetest 8 year old little boy, Liam. 

I’ve known Liam all his short life. The minute I met him I fell in love. 

I met him for the first time at the home of my best friend. Bobby also suffered with Dystrophic EB and we were very close. 

Bobby passed away 7 years ago but before he died he threw a massive casino night in his home. Grainne (Liam’s mom) came down for it and I got to meet Liam for the first time then. 

Those eyes. And OMG those eyelashes!!! 😱 He was the most beautiful little boy. 

For all the pain and heartache he went through he was a very happy boy, even at that young age. 

I had to have a cuddle. I knew he was so fragile but he was just too cute. I had to have him in my arms. I just had to be gentle. 

He was absolutely gorgeous and was quite content  on my lap. Not a peep out of him! He looked up to me at one point and I just melted. 

After this photo was taken we quickly became the EB family!!! 

I didn’t get to see Liam and his family very often. They lived in Monaghan so it was hard for me to get to them. πŸ˜ͺ But I always knew how he was and how he was getting on. 

I saw him mostly at DEBRA Ireland events. I loved seeing him and all the other kids with EB. He was always so sweet, so kind, so gentle. He grew up so fast!! 😱

I saw him and his family last Christmas at a Christmas party DEBRA Ireland organised for the families. 

He looked so well! He was happy out playing on his little iPad! 

Look at that little face!!! 😍 

The last time I saw Liam was in Barretstown in September. I knew him and his family were going to be there. I was so excited to see him – I was so excited to see all the families. There was lots of people going to be there that I had never met before. 

There I was, sitting in a hall in Barretstown with Claudia when I saw Liam scooting over to me in his wheelchair. 

He looked so happy to be there and looked like he was having a great time! 

His mom, grandparents and even his great-grandparents were there. 

I’ve gotten to know his family over the last few years and I have to say, they are absolutely amazing people. Like my family, they have completely dedicated their life to helping him in any way they can. They’re just lovely, kind, wonderful people. 

Anyway, I watched, enjoyed, chatted and got to know him even better that day. 

Myself, Claudia and Liam chatted about everything from what bandages we use and hate to what football team we liked. I learned that Liam supported Liverpool. 

He told me he even got up and tried to play football himself!!! 😱 OMG, I nearly fell out of my chair!! πŸ˜‚ But yet I was delighted he did cuz I know I’d do the exact same thing!!! πŸ˜‚

I got to see him at different points throughout the day and I knew he was having a great day!!! You could tell by the huge smile on his face! 😊 I think I remember him doing lots of arts and crafts. That day I will treasure forever. 

It was time for me to go. It was killing me cuz I loved spending time with them all. Little did I know it would be the last time I saw him. If I’d known I’d never have left. πŸ˜ͺ

I was taking one last photo with him and I asked him the big question…”Liam, will you be my future husband”?? πŸ˜‚ I had to ask!! (I was asked when I was 8 too by Aaron Fynes, God knows what I said but I think it’s on video somewhere!). The response…”Maybe”!!! πŸ˜±πŸ˜‚ Oh god I adored him!! The innocence of him! 

I left…

Three weeks later I got the worst news of my life. News I never ever expected. 

I got a call on a Friday evening from Jimmy, DEBRA Ireland’s CEO saying that Liam had got very unwell very quickly and it was very serious. 

I didn’t believe how bad it was. I thought, “it’s Liam, he’s a fighter, it’s not that bad, he’ll be absolutely fine”. πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»

But he wasn’t…

That next day I was sitting watching The X Factor and my phone beeped. I was too scared to look so mom did, her face said it all. 😭 Noooo, this can’t be happening. Please, no. πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»

I was devastated. There are no words for this feeling, this pain. I think I could actually feel my heart breaking. 

This isn’t right, this isn’t fair. He’s just a little boy who doesn’t deserve this. Why, why is this happening?? 

If I could have swapped places with him I think I would have. He had his whole life ahead of him. 

Life with EB is so hard, there are obstacles at every turn but he should have been given the chance to live it. 

I didn’t sleep, I didn’t eat, all I did was cry. There is nothing to say. I just can’t believe this is happening, that’s all I can say. And if I feel this bad, I can’t begin to imagine how his family feel. πŸ™ˆ

The funeral was 2 days later. I was dreading it. How was I going to look at the family, what do I say??? πŸ€”

The church was packed! 😳 It just showed how loved he was. There was people everywhere, crowding into a small church. It was horrible weather and it just reflected how everyone felt. 😰

I think the whole church cried through the funeral. I think everyone thought the same thing, “this is so wrong, we shouldn’t be here”. Seeing a little white coffin on the alter should be a sight no one should ever see. 

The entire EB community was rocked. Everyone was devastated, shocked, i know i felt I was in this surreal zombie mode getting through the day as best we can. 

Being totally honest, deep down, I was scared too. What’s going to happen to me? This was so sudden, no one saw it coming. It scary, not knowing how/where I’ll be tomorrow…

This is the hardest blog I’ve ever written. To be honest, it has taken me weeks to write it. Whatever I say will never do that beautiful little boy any justice. 

I am so happy I got to meet that very special little boy. Even if it was just for a short time. . 

All the kids mean the world to me and whatever happens I know I will never ever forget that amazing boy. πŸ’™

Goodnight, sweet dreams Liam. πŸ’™

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Really??

Really??

I’ve had such an amazing time at Barretstown and I loved receiving our awards but this can’t be happening again. The infection can’t be back! 😱

Over the last few weeks I’ve had a few wounds on my left foot. They were sore but nothing I was too concerned about. 

All my life I’ve had problems with my left foot. It’s been a nightmare for me at times but I’ve always got through it. I’ve tried to get out as much as I could. 

It’s never EVER been clear of wounds. It’s always had something. 😑

One year I was at the Mini Marathon and it rained on top of me. πŸ’¦ I got soaked!!! 😱 The rain went through my clothes and right through my bandages. 

Eventually my bandages dried but when they did, they practically turned into sandpaper and took the skin off 90% of my foot. 😫 It was awful. It took 18 months for that to heal. 😀

That’s just one example of the many problems I’ve had with this foot. 

It causes me so much trouble that they should make a film called “My Left Foot”…oh wait, they already did!!! πŸ˜‚

Anyway, like I said over the last few weeks I’ve had a few wounds on it. There is 2 medium sized ones on my inner ankle and others on my heel and around the rest of my foot. 

Unfortunately the ones on my ankle joined up into one huge wound!! 😱 It was so painful and to me if definitely looked infected. πŸ™ˆ It had yellow/green exudate all over the wound and it wouldn’t budge. 

So the Public Health Nurse came on a Wednesday and took a swab of my ankle. 

God, even taking a swab of my ankle is hurting me. 😩 A swab is like a giant cotton bud and you run it over the wound to take a sample of whatever is on it. 

Anyway, Sebrina and I dropped it into the lab in Portlaoise for it to be checked. It should be back to us in the next few days. 

Well, it should anyway!! We waited, and we waited. 😀 There was no sign of it. But when we’re waiting on things like this, all I can say is “no news is good news”! πŸ™πŸ»

Or is it??……

Mom and I were on the train one Friday afternoon. We were actually coming home from the hospital. 

I had an appointment to check my tube that feeds me. It was leaking really badly. It was even at the stage where whatever I drank or took through the tube it would leak back out 30minutes later. So I wasn’t getting all my meds. 😱 That can’t happen so we got it sorted. 

We hadn’t pulled out of the station yet. But moms phone rang on the train. It was my GP. Oh God, he never rings!! 😱

He said that I had not 1, but 2 (!!!) infections in my ankle. Oh no, this can’t be happening. 

I had a minor infection that could be easily sorted with some oral antibiotics, but the other infection was the problem. πŸ˜”

I had an infection called Psuedomonous. It is the bad infection that made me so sick back in March. I immediately got upset. He said the only way to get rid of it was IV antibiotics. He also said it was so serious that I should get off the train and go back to the hospital. 😱😱😱

He ended the conversation by saying that he was going to ring my EB nurse. So we sat, and we waited…

Then the phone rang again…OMG, I didn’t expect this to be happening. By the time this day is over I could be in a hospital bed πŸ˜ͺ

So, my nurse was on the phone and in those few minutes she had spoken to my specialist doctor. 

My doctor said that she didn’t want to admit me on that day. She said that if I wasn’t “systemically unwell” that I wasn’t to be admitted. Basically she wanted me to get worse before she admitted me. Which was definitely going to happen. This infection will not go away without IV intervention. 

And I did get worse…fast!! πŸ˜ͺ

I was back up the following week to be seen by a different EB doctor. I know him all my life. He’s a brilliant EB doctor. He’s so gentle, kind and understanding. 

He looked at my shoulder/underarm, my back, my knee and my foot. They all looked quite bad and were so sore. 

He said to go clean the wounds with Milton and use a topical cream on the ones he saw. The cream was called Chrystaside. It was basically Milton in a cream formula. And my God did it sting or what?? I screamed every time it was put on a wound. Oh God I’m not able for this. 

Before I went up to see them I took some more swabs. I took 6 more swabs in total. The results came back after I saw the doctor. πŸ™πŸ»

Out of 6 of the swabs taken, 5 of them were Psuedomonous. 😱 Oh, I was devastated. 😭 It meant that that terrible infection was running through my body. The only thing was that the infection was on my wounds and not in my body. 😳

After I got the results I rang my EB nurse again and to be honest I begged to be admitted. I couldn’t believe I was begging to go in but I really didn’t want to get any worse, I don’t want to be “systematically unwell”. It’s scary. When I’m like that I can’t function. 😩

But my doctor was still insisting that I stick with the topical treatment. Her thinking makes sense really. If I use the IV antibiotic for an infection that’s not too bad then I’ll become immune to the antibiotic and then it won’t work when I really need it. 

So as you can see it makes sense. But I know I need to be in. I know this is serious. 

In one week I developed very very deep wounds under both my arms. They look like massive bulletholes. My bum had improved over the last few months but it’s in a terrible way again. Both my thighs have no skin on them and one of my arms has no skin on the forearm. That’s in addition to what I mentioned earlier. 

I’m falling apart in a big way. 

Now, it’s Sunday evening, I’m watching the X Factor in sheer agony. None of my pain killers are hitting the spot. All I can think about is my hospital appointment next Wednesday and I’m not shy to say I’m absolutely terrified. 😩😱πŸ˜ͺ

I’ll be bringing my overnight bag but I’ve no idea what’s going to happen. 😳

Please keep your fingers crossed for me πŸ™πŸ»

πŸ’™

And The Winner Is…

And The Winner Is…

Oh my God, the day is here. 😱 Today is the day that me, mom and DEBRA Ireland find out if we’ve won a Hidden Heros Award or not!!! πŸ€—

Ok so 2 weeks ago Judith from DEBRA Ireland called to say that they had nominated me for an award and I was shortlisted!! Can you believe it?? Me, shortlisted for an award. 😱

I was so honoured to get my People of the Year Award a few years back but to be nominated again is just amazing!! People are so thoughtful. I’ve had such a bad year that it was exactly what I needed to hear. 

2 days later Jude called again…this time with the news that MOM had also been nominated and she had also been shortlisted. πŸ€— 

Me and Sebrina were driving when we got the call (thankfully I wasn’t actually driving!!) and we both just burst!! I grabbed Sebrina’s hand and we were both screaming with joy!!

For 32 years mom has been caring for me and doing everything in her power to keep me well. But she has never got any recognition for it. She deserves this award more than anyone…including me!! I think she deserves an award every day!! 

Now I had the tough task of telling people without mom finding out!! πŸ˜‚ I decided to keep it a little secret from mom because I knew she wouldn’t sleep for the whole 2 weeks before the awards!! She’d have many a sleepless night, worrying away!! And I wanted her to enjoy the day, not dread it!! πŸ™„

In my excitement I immediately rang my aunty Angela, moms sister who we’re very close to and I knew she’d be as happy as I was at moms award. But she missed my call and mom was away for the day so I knew when she’d see my missed call she’d panic!! 😱 Oh no!!! She rang back quite quickly and I was right, she thought something happened me and I couldn’t call mom!! πŸ˜‚ Oh God, the drama of it all!!! πŸ˜‚πŸ˜‚

But I told her the exciting news, and she was thrilled!! She was delighted I was getting an award but everyone felt the same, that mom so deserves this award. I told dad that evening and begged him not to tell her. I told Catherine that weekend and she was delighted for us both too – although the sad part was that she was away for the actual awards day. πŸ˜ͺ 

So I’d told everyone and begged them all not to say a word. Now for the next 2 weeks I pretended it wasn’t happening cuz I was terrified I’d let something slip!! πŸ˜‚

Mom had her dress sorted and I had bought a beautiful new green dress. I had arranged for the girls from the local hairdressers Ego Boost to come up and do our hair that morning. (She didn’t suspect a thing!!) #Winning!! πŸ€—

We had also decided to do bandages on the Sunday night to save us from getting up extra early Monday morning. If I had done bandages on Monday morning not only would I have been wrecked from it but I would have been in agony too. I wouldn’t have wanted to go anywhere then

So, the day is here…

We got up at 8am Monday morning. The girls from Ego Boost were coming at 9am. Looking back, I should have done my make-up before they came but that was too early for me!! 😴 

Mom was getting a blow dry and I was getting a messy side bun. Didn’t take too long, we were finished by 9.45am and I loved it. I’m lucky, they always do exactly what I want and Pam and the girls are very good to me. 😘

Anyway, the girls were just gone out the door when Sebrina arrived, very kindly with 2 Costa’s in her hand. 😍 I wasn’t even dressed but I knew she was there to help me. 

We went down to the room to get me dressed and I was slightly (just slightly!) panicking. It was gone 10am and we were to be leaving by 10.30…and I still hadn’t told mom about her award!!! πŸ˜‚

Ok, it was time!! Sebrina was busy helping me with my dress and I called mom down to my room. I couldn’t let her go to the hotel not knowing!! 😳 She’d really have killed me then!!! πŸ˜‚

Mom came down with her hair done and her dress on, she looked beautiful. I told her she looked lovely and Sebrina said “You’d think you were getting an award”! She said “Sure why would I be”?, and I said “Maybe because you’re an Unsung Hero”!! I then said “Today’s your day mom, you’re getting an award for being an Unsung Hero”! She wouldn’t believe me, she kept saying “You’re messing, you’re messing”!! πŸ˜‚

It took ages to convince her. I even had to put my arm across her to keep her in the room!! 

Would you believe me if I told you we were in the car at 10.45 – not too bad!! πŸ‘πŸ» We were dressed and ready to go!! I had to put on my make-up in the car. It was a nightmare but Sebrina helped me! How it turned out OK I’ll never know!! 😳

Sebrina did help me. But she also fitted in taking photos of the flower in her hair and i was busy photobombing it!!! πŸ˜‚πŸ˜‚

We somehow made it there in one piece and my make-up was actually on my face and not on my dress!!! πŸ˜‚ 

We got to the hotel and it was mad busy. There was people and cars everywhere. I think the Dublin team had stayed there the night before so there was lots of people wanting to see them. Plus there was over 200 people there for the awards. 😱 We met my aunt and uncle and the girls from DEBRA – we were all so excited!! πŸ€—

We had to take some photos on the red carpet…We all clean up well I think!! 😚

We got to the reception and we were all offered a glass of wine. 🍷 But I couldn’t have any (even just to calm my nerves!!) because of my poxy Ketamine – that ruins all my nights out 😀 

Suddenly there was people coming over to mom and I asking us to go outside for photos and interviews. Ooh that’ll be nice to get some good photos of us. 

We got asked the usual questions…”What is EB”?, “How are you affected”?, “How often do you do bandages”?, “How do you feel to be nominated”?… I always feel very important having tape recorders in front of me!! πŸ˜‚ 

There was easily 3 or 4 photographs taking photos of all the nominees and well known Irish faces. I took some family photos (minus Catherine!) and then I was in some photos with Miriam O’Callaghan and Sean, another nominee. It was lots of fun. Plus the sun was shining which made it all the better! β˜€οΈ

We all went back inside and again I was pulled aside to do an interview with the six one news. Somehow mom escaped all these interviews!! 😳 But me, I had to work for my award!!! πŸ˜±πŸ˜‚ 

I missed all the fun of the reception and when I was finished my interviews we were heading into the dining room – it was beautiful. 😍 We were seated all together and close to the stage. 

The lovely food quickly arrived. It was a goats cheese tart/salad, steak or salmon for the mains. I have to say I can’t eat the steak (or salmon for that matter) but the steak looked yummy. It was a slab of meat, Sebrina struggled to cut through it!! 

During the meal I had to go outside. I was really struggling with the heat and I had to take my medicine. My dress was so big that it took ages to find my tube!! πŸ˜‚ 

We were coming back in and we met Lorraine Keane! 😳 I have to say she’s so lovely and kind and so bubbly!! I immediately warmed to her! Somehow she knew who I was!! 😱 How is that??!! I loved her dress too, it was gorgeous on her. 

We were going back in and Mary Kennedy was up on stage getting ready to start. Oooh here we goβ€¦πŸ˜±

There was 2 awards given out in each category. So there was a “Hero” award and a “Special Recognition” award. But there was so many amazing people who had done amazing things in the room. Lots of awards to give out but I couldn’t wait to hear all their stories. ❀️ 

There was also a “Charity Hero” award. I think about 10 charities were nominated and it was then down to a Twitter vote to decide the winner. Immediately I could see Judith and Cheryl get on their phones to get everyone they knew to vote for us. I put it up on my page too but there was some big charities up to win so I was nervous. πŸ˜”

There was so many amazing winners up. There was a young boy about 11 years old who was with his uncle one day. While there, this uncle went into a diabetic coma and he called 911 and saved his uncle’s life. 

There was a little girl about 7 years old who was receiving the “Lifetime” award on behalf of her mom who has passed away recently but before she died she set up a service for young children who have parents who are dying. 

Another man got an award for setting up a taxi service for people who want to commit suicide. Drivers are trained in safeTALK and ASIST. 

Another lady has set up her own company in Waterford called Wigworld. She helps many people to have lost their hair either because of cancer or alopecia or other medical related problems. 

It quickly came around to moms catagory…Unsung Hero!!! 😱 Oh my God, this is too much!! I can’t cope. I’m so nervous for her!! πŸ™„ But all she has to do is go up, accept the award, take a photo and come back to the table. Sounds easy, right?! πŸ™πŸ» 

Mary Kennedy talks about her for a bit before she goes up for the award. She says that mom has cared for me all my life, that we have always worked as a team and that although she is quiet (really?!), she has superhuman strength…which she has!! 😍 

And here is PATRICIA FOGARTY!!!!! πŸ˜±πŸ˜±πŸ‘πŸ»πŸ‘πŸ»πŸ˜˜πŸ˜˜ Oh God, I could burst with pride or just burst into tears!!! πŸ˜… This is the most amazing moment. I want to take this in, I want to remember every move she makes because she deserves more than anyone I’ve ever known!! I hope she knows that!! 😍

At some point between awards they announced that the Twitter vote was going really well. But because there was such big names up there I didn’t expect to see DEBRA Ireland but…there we were…IN THE TOP 4!!! 😱😱😱

Soon after that the award “Courage over Adversity” is up. Oh wait, that’s me!!! 😳😳 Oh my God, am I ok?? Is my dress, make-up and hair all ok????!!! 

Again Mary spoke about me before I went up. She said that I was born with EB but I had done it all, Leaving Cert, college and I worked in PTSB too. She talked about my bandages and how painful they were but I always kept going. 

If I’m honest I was half listening. I was more looking at the ramp up to the stage and wondered how in the name of God was I going to get up?! It looked quite steep. I could easily roll back or someone could tip me off the edge of it!!! 😱😱 I was suddenly panicking. 

I was snapped out of my worrying though when I heard my name being called. Ok, stay calm, here we go!! 😰 Sebrina brought me up to the stage but as we turned to go up the ramp (😱) I could see my uncle Sean running after us!! Ok, he’s here, he’ll help us πŸ™πŸ» 

He took over and in one swift push we were going up the ramp. I think I closed my eyes half way up!! πŸ˜‚ But I got there and I somehow managed to smile for the camera!! Get me back to my table where it’s safe now please!!! πŸ™„πŸ˜‚

I was one of the last awards given out on the day so I thought we were finished. But no, there was more to come yet!! The results of the twitter vote were next  Oooh who’s gonna win. We were probably the smallest charity in the top 4 so…

As they we talking about the Twitter vote and as they were opening the envelope I was saying to Judith, “This has been a great day, we’ve done really well to get our 2 awards…”. Then out of nowhere I heard “And the winner is…DEBRA Ireland”!!!!! 😱😱😱😱 Whhhhaaaattt???

Hugs all round!!!! πŸ’™πŸ’™πŸ’™

After we all calmed down (!!!) we mingled for a little bit and took some photos. I got chatting to loads of people including Alan Hughes (who remembered me from when I was on with them in Open House) and I spoke to the character that is Joanne O’Riordan!! I ❀️ her!!! She’s just brilliant. πŸ˜‚ I could have stayed chatting to her for hours!!! 😍

I had to get some photos with everyone in front of the Hidden Heros board!! 




Wow!! What an amazing day. A day I’ll definitely never forget. 

It was an absolute prilivage to be surrounded by such amazing and inspiring people. 
Well done to all the winners. πŸ€—πŸ€—πŸ€—

Barretstown ButterfliesΒ 

Barretstown ButterfliesΒ 

It’s always a great week when you get great results from doctors at an EB clinic, then spend a day at Barretstown with the most beautiful kiddies in the world and finally attend an awards ceremony!! πŸ€—

2 weeks ago today I attended a routine hospital appointment. It was just a skin review. Dr. Browne, Eadaoin, Katherine and to my surprise the lovely Suzi O’Neill was there. 

Suzi is the new EB nurse that will go on the road to visit EB patients in their home. It’s a very exciting new role for me, plus I know Suzi a long time and I adore her and think she is the perfect person for the job!

Anyway I got to the hospital and I have to say I was a little nervous. I felt I had been doing really well but was very unsure as to what they would say. πŸ€”

Although for the first time in months I had got dressed to go to the hospital! I was so unwell recently and in so much pain that I just lived in my pj’s and didn’t bother getting dressed. So that has to be a good sign. πŸ™πŸ»

First things first! Time for my weigh-in!! Oooh, I’ve lost weight!! 😳 For most people this would be a great result but not for me!! I need all the weight I can get!! Ok, not a good start, now I’m extra nervous!! 😠

Let’s start taking off some bandages. We start on my shoulders and work our way down. 

For the last few weeks I’ve been using Fucibet, I like to call it my ‘magic cream’! It always works really well on my wounds, although I’m not surprised because the cream is mixed with an antibiotic and steroid so it never fails!! πŸ€— The only problem with using that mix is you can become immune to the antibiotic and so it won’t work anymore. So you have to be careful how long you use it for. 😠

Ok, we’re a few bandages in and Dr. Browns seems very happy with everything she sees!! She doesn’t seem disappointed or worried about anything. This is going good!! πŸ€—

It may have gone really well but it still took 4 hours to get them done. Ugh!! I was wrecked 😴 But as bad as it was I was still able to go for a coffee with my aunt afterwards!! πŸ˜β˜•οΈ

I’m so glad that went so well!! I couldn’t be happier!! I have a busy weekend coming up so I need to be healthy and able to do everything. Time to rest for a few days now. 😴

It’s Saturday and it’s an early start. To be honest I’m still wrecked from the skin review on Wednesday. But I don’t care, I’m so excited for this day! I’ve been waiting so long for today! πŸ€—

Today is a Family Day in Barretstown for all our EB families! It’s going to be great, I’ve heard so many good things about it from the DEBRA Ireland team! 😊

I’m up early to get ready. The plan is to be ready when Sebrina gets here and we can head off straight away. 

I’ve decided to wear a vibrant pink dress with a ruffle on the sleeves. I love it. It’s a lovely, bright, summers dress. I’m wearing a black top under it to keep me warm. Barretstown is based mainly outdoors and it’s an awful day! β˜”οΈ

Sebrina arrives at 10.30 and straightens my hair!! Can’t go anywhere with frizzy hair – not a good look!! πŸ˜‚ Then we hit the road. 

It’s only about 50 minutes to Barretstown from my house which isn’t too bad and it’s motorway most of the way which is so handy. But once we came off the motorway…OMG is all I can say!! It was the worst road I have ever been on. The potholes, bumps and winding road was unbelievable!!! 😱😱 I can’t put on mascara now!! πŸ‘ Although I should be more worried about my bum right now! It kinda hurts now πŸ˜ͺ

But we made it there eventually, thanks to Google Maps!! God knows where we’d end up without Google!! 😊 We got there and parked and we were met by a girl called Sarah holding an umbrella – it was lashing! 😑

It was so lovely there. It was like little schoolhouses were attached together and arts and crafts and other activities were going on inside. It was so sweet. We could hear lots going on inside them. Time to have some fun!!! 

All the families were scattered about so it was hard to go to one section. Some people were at Lego, some were on a climbing wall and I think some were even out kayaking!!! 😳 But soon after we arrived it was lunchtime and everyone came to be main centre. 

The room was packed with either people I haven’t seen in years, people that were completely new to me or the usual suspects!!! I was so excited!! πŸ€—

I was seated with my girl, Claudia and Gary (her daddy!) and some of the DEBRA Ireland girls and each table/family had 4 or 5 volunteers allocated to them! It was very well set up. We were taken very good care of by Barretstown. 

I couldn’t stop looking around with a huge smile on my face.😍 I was so happy to see so many families in one place. So many amazing people – parents and children. πŸ‘¨β€πŸ‘©β€πŸ‘§

Wait til you hear this…when the kids were finished their lunch the staff of Barretstown jumped up and started singing and dancing. It was so cute, the kids were loving it!! πŸ’—


After lunch Deirdre, the Patient Support Worker in DEBRA Ireland had organised a session in mindfulness. I was really looking forward to that. I’ve been saying I’d love to do it for months now. With all the pain I’ve been in I’d try anything to help it. 

The girl who was teaching the class was called Mary. She seemed lovely, very gentle and softly spoken! She was very keen to help me in any way she could. I also dragged a very reluctant Sebrina along too! πŸ˜‚

A lot of people came along to the class. It was good to see so many friendly faces there, some I knew and some I didn’t know! The class itself was so calming and relaxing! She taught us how to breath properly, listen to anything that was in the room and avoid our own thoughts and worries. 😴

After the class we went to the main centre and had dinner. There was lots more singing and dancing. Kids and adults were all joining in. It was brilliant to watch! πŸ˜‚ 

Then I just tried to get around to everyone for the rest of the evening. I really wanted to talk to everyone in that room. 

I got to chat to Claud all afternoon. Claudia has just started secondary school and she was filling me in on everything. 

I spoke to Jack Rynne and his dad, brother and sister, I also spoke to Miriam Quinlan, I haven’t seen her in years. 

I saw Gunita and her gorgeous little lady Maria. Maria has just turned 1 and had the same form of EB as me. But she looks amazing! πŸ’—

I spoke to my sweetest little boy Liam. He agreed to be my future husband! πŸ’™ I know Liam and his family since he was a baby and they’re just a lovely family with a gorgeous little man!

Finally, I almost ran around the place looking for Casey and her family before she went to bed. She just the cutest little girl and I love seeing her. She’s such a living and chatty little thing!! Although I think she was wrecked herself! 😴

So, as you can see I was a little busy!!! πŸ™„ It was a bit mad but I didn’t care, it was so great to see everyone. I loved catching up with everyone. 

Although I did have to go have a lie down at one point. I was exhausted and I was in a lot of pain. If I’m really honest I was struggling a lot. I was sitting for so long and constantly on the move that it was getting difficult. 

I really needed to go but really REALLY didn’t want to. πŸ˜ͺ But my time was up…I had to leave πŸ˜ͺ Noooo……

Goodbye kisses all round 😘

We left at 8pm and set back on that bumpy road…oh god, seriously???😳 But I was tucked up in my bed at 9.10pm! 

Next up, Hidden Heros Awards Ceremony…

Lots of rest needed for a big day!!! πŸ€—

From The Ground Up πŸ’™

From The Ground Up πŸ’™

For as long as I can remember I’ve been a rugby fan. Any rugby game that’s on the telly, whether it’s the Heineken Cup or a friendly game, I’m always glued to it. 

So getting an opportunity to go to the Leinster Team Training Centre was a dream come true! πŸ’™

A few weeks ago I was at a meeting with Judith and Cheryl from DEBRA Ireland, and Sebrina was there too. 

I remember Judith telling me about a meeting they had been to that morning. The Leinster Rugby team were looking for 2 charities to be a part of their ‘Charity of the Year’. It sounded very exciting. 

I couldn’t stop thinking about it. That it would be a huge opportunity for us! πŸ€— I so hoped they would pick us. 

A few weeks later I was lying in bed after one of my mid-week bandage changes when I got a text from Jude. It read “Can you come to Dublin next Monday? We got Charity of the Year with Leinster”!!! 😱

Omg, seriously??!! I can’t believe this is happening!!! 😜 We went for this a few years ago and missed out so it’s absolutely fantastic we have it now. 

Sebrina usually works on a Tuesday so I had to ask her if she was able to swap days/times. 

I needed her on Monday from 12noon til 7pm. I was so nervous she wouldn’t be able to. If she had something else on I was in trouble.…and I so wanted to be there!! πŸ€—

I couldn’t wait til I saw her to ask her. I had to text her on Wednesday evening. She said she had nothing on and was able to bring me up. Yay!! πŸ€—

Would you believe me if I told you I also had to ask my nurse to come to me at 7.30am on the Monday morning in order for me to get all my bandages done on time!! πŸ™„ How, in the name of God, will I get up at that time??!! 😱 It’ll (probably) kill me!! πŸ˜‚

Sebrina arrived at 12noon and helped me get dressed and we were ready to go at 1.30pm. I got all dollied up – you never know who you might meet up there!πŸ˜‚πŸ‘—πŸ˜‚

I set up the sat-nav and off we went! I was so excited! To be honest I was more excited than I thought I would be! I don’t know why. I am a big fan of the Leinster Rugby Team! πŸ‰ I even nearly spilt my beloved Costa on the way up!! πŸ˜‚

We got to the Leinster Training Grounds at 3pm and met Jude, Cheryl and Susan. We went in and then met Marcus who’s in charge of Media and Communications. He seemed lovely and a big help to the girls in DEBRA Ireland. 

We also met the guys from Aware. The other charity that was a recipient of the Leinster campaign. The guys from Aware were lovely. To see both signs up for DEBRA Ireland and Aware was so great. We were all very excited! 😊


The boys had been at training so slowly they came up to the room. James Tracy, Tom Daly, Leo Cullen, Adam Byrne, Isa Nacewa and more were there. 

They seemed wrecked after their hour of training. 😴 But they were all lovely, chatted away and answered all our questions! 😍 (ALL our questions!!)

Unfortunately, my Johnny wasn’t there. πŸ˜ͺ He’s still out of action after damaging and having surgery on his shoulder. I was so disappointed that he wasn’t there. He’s so lovely and I really like him. I’ve always got on with him. He’s a gentleman. 

Marcus then did a quick “Hello” to everyone and then introduced Jude to speak. She said a few words about how grateful we were and how much we needed this to raise awareness for such a small charity like us. 

Then she handed it over to me! πŸ€” Oh no, what do I say to all these giants standing in front of me?!! πŸ˜³πŸ˜‚ 

I mainly spoke about the pain I endure. About how I’ve always lived in constant pain. Although I’m sure they know a thing or 2 about pain. They’re beaten around a pitch every week! 

It’s ironic…I’m speaking about how fragile my skin is and they probably have the toughest skin in the world!!! πŸ˜‚ Butterfly skin Vs A Giants skin!!! πŸ˜‚

I finished my short (& sweet!) speech. Then Aware got up and spoke too. They spoke about the stigma that comes with Aware. People who are depressed are looked at differently. That’s very similar to my every day life – I always get looked at differently. 

Then it was straight into taking photos for their website/social media and for national newspapers. I loved it! Surrounded by rugby men isn’t the worst thing in the world!! πŸ˜‚ EB?? What’s EB??!! πŸ˜‚πŸ˜‚

We took some photos inside with the boys…

And then we took some more out in the sunshine.…

They turned out really well. Although I saw some of them having trouble kneeling on the tarmac! πŸ™ˆ Our t-shirts kinda matched their training shirts too!! We co-ordinated really well!! 

While the photos were being taken Sebrina ran to Marcus and told him that my dad was a massive fan of rugby. We wondered was there anything he could do for dad. He ended up coming to us before we left and gave us a little bag full of goodies for dad. I was so grateful. I knew dad would be delighted!! 😊

Then it was time to say our goodbyes. πŸ˜ͺ The girls stayed on with Marcus and Aware to have a chat about the year ahead. I had to go, I had to get home. I was starting to struggle with my pain levels and I was running outta pain meds. 

Even though I wasn’t coping very well, we couldn’t leave without getting a few pics!! The lobby of the Leinster Headquarters is done up really well. I had to get some nice photos – I don’t know when I’ll be back! 

The next 2 years ahead with Leinster will be amazing. 

I can’t wait for the many happy days coming our way! 

“From The Ground Up”

πŸ’™

Desperate Times Call For Desperate Measures

Desperate Times Call For Desperate Measures

Have you ever been so desperate that you’re willing to do anything for just a little bit of help??

Well I was in that very position a few weekends ago. I didn’t know what to do…but I knew I had to do something! 

I had been doing quite well for the last few weeks. I definitely felt like I was turning a corner and was having more good days than bad. But that weekend was very different. I was so sore, I was back to square one – I was in so much pain that I was struggling to get out of bed…why now, why is this happening again! πŸ˜ͺ😑

I can’t go back to this. I was so disappointed because I had been doing really well. 

I was in the bathroom, crying from the pain of getting out of bed and getting to the bathroom.πŸ˜ͺ I started to think back to a few weeks ago – Mom had got a call from our local priest. 

He said that a man had called him and said he had read my interview in the Independent and he wanted to help me. He was a Faith Healer from Co. Mayo. 😳

Immediately I had my guard up. I have been to many people saying they can help me. In my younger years, mom and I travelled the country in the hope someone can create some miracle. So I was very sceptical. πŸ€”

Myself and mom diacussed it and we came to the conclusion that I didn’t want to do it. So we never called him back. 

But weeks later, while I was in horrendous pain & crying I just said to mom “Make the call”. πŸ˜ͺ She knew what I was talking about. I needed help in whatever form that came in. This just couldn’t continue. 

Mom rang him that evening. He was delighted we called him and was eager to help me. We arranged a day for the following week. There was no way I could travel to Mayo but he was adamant he was going to come down to us. He sounded so kind and generous. 

I was a little nervous if I’m honest!! I don’t really know why but I didn’t know what to expect. 😳

He arrived to the house at 2pm. I was sitting in the living room in my pj’s- I didn’t have the energy to get dressed. 

When he came in and I saw him, he oozed kindness and gentleness. He seemed like a very quiet man who was completely devoted to what he did. 

I was still sceptical but had a little bit of hope that something would happen for me. He said he was the 7th son of the 7th son. He also said he had files of letters at home from people who have written to him thanking him for curing them. He said he had cured 20 blind people. Is that true? I really don’t know but I secretly prayed he was right. 

So there I sat in my pj’s while he gently lay his hands on me while he silently prayed. I closed my eyes and chanted “Please, please, please…”. I hoped, I hoped so badly. If you don’t have hope you have nothing. Everyone hopes for something. πŸ™πŸ»

He lay his hands all over my body continuously for at least 20 minutes. My parents stayed with us and I could see them both praying so hard. 

We spoke for a short while afterwards. He said he could feel a tingling in my right leg. What that means, No one knows! But that was where my thigh was at it’s worst. There was practically no skin on it and so painful so maybe that was it?? πŸ€” 

2 weeks later I’m lying here in bed still thinking about him and wondering if it worked! πŸ˜€ I’m definitely feeling a bit better, I have more good days right now than I did a month ago. That has to be progress, right??!! πŸ€—

I’m getting out more often. I get to go out for a Costa, I get to go to DEBRA Ireland events. I even got to meet the Minister for Disability – that was a big day out.😊 I still struggle in the evening after a long day out but it’s so worth it. At least I can get out now. Not long ago I couldn’t get out of the bed. πŸ˜ͺ

So did it work?? I don’t have the answer to that. I don’t know if he’s made a difference or is it just the medication. I’m on a lot of meds still but something has made me a bit better. 

I still wonder to this day what has changed. But I’m not as unsure or guarded about people and their ‘gifts’ now. I’m glad I did it and I’d advise anyone to take a chance and give it a go. What do you have to lose?! πŸ™ˆ

Desperate times call for desperate measures. But maybe this time my “desperate measures” have worked. πŸ€— 

Lets just hope this good spell will last. πŸ’—

Charlotte – My New Best Friend!

Charlotte – My New Best Friend!

Most people believe having a spot or pimple on their face is the worst thing ever. Well trust me, it’s not!

Imagine having a raw open wound on your face, right where everyone’s eyes are drawn to it. 

Please, no! This can’t be happening!!! 😱 As if I don’t have enough wounds on my entire body I now have a small round wound on my face!! 

It’s only the size of a 5 cent coin but it’s staring at me in the mirror (it’s practically waving at me!! πŸ˜‚). Now what’ll I do? I don’t want to go out like this. 

I’ve always been so proud of the fact that I have no open areas on my face/neck but here I am with my next challenge. Hmmm, what to doβ€¦πŸ€”

Ive always loved and used all kinds of make-up. Like us all, I’ve experimented with make-up since my teenage years.

 I’ve used various brands of foundation over the years, ranging from affordable make-up to the more expensive brands. 

But now I can’t even wear my make-up, I can’t put it on a raw area. God only knows what could go wrong if I did…infection maybe…on my face (???) No thank you!!!! 😳

So I’ve to wait a full week for a crust to grow on my face. You obviously can’t put a bandage on my face. So now I’ve a big blood coloured crust on my face.πŸ™ˆ It feels like the size of a mountain!! β›°

I’m going to Costa (surprise, surprise!!) but I can’t go out like this, I have to do something!! 

I don’t care, I pull out my make-up bag and start putting on my foundation. This has to be covered. But my current foundation isn’t hiding it. Oh no, the crust is too big and dark in colour. 

Ok, let’s not panic! I think it’s time for a trip to Dublin. I know this crust is going to live with me for a while yet so I’ve to find something that will do the job!

For months I’ve been threatening to buy the Charlotte Tilbury Magic Foundation. I’ve seen it on XposΓ¨, I’ve read it on SoSueMe’s blog, it’s everywhere and it’s got rave reviews. I have to try it. But wasn’t confident about it covering the scab. 

So off myself and Sebrina went to find Charlotte in Dublin. We walked into Brown Thomas and there she was…waiting for us!! πŸ˜‚

I met a lovely girl called Rachel and I explained EB to her. She was so kind and completely understood that no matter what, she had to be gentle. I’m sure she was a little nervous of hurting me. 

She put on the Magic foundation all over my face, even over the crusted area. Sebrina took one look at me and the gasp said it all!! πŸ€—

I have to say, it really is amazing what a foundation alone can do. Immediately my skin looked smoother but more importantly my completion was clear. Clearer than I’ve ever seen it. 

Over the years, especially during my childhood I fell a lot. Every time I fell, I skinned my nose. That means that I’ve a lot of scar tissue on my nose and some on my cheeks. So them areas are quite red all of the time. 

This ‘Magic’ foundation certainly is magic. Not only could I not see one red mark, I could only see the faint darkness of the crust. This is amazing!!! 😍 I’m so in love with this product!! ❀️

The coverage was obviously the biggest bonus for me but it was also very easy to apply and it was so light. When I wore it I barely felt it. It was like a 2nd skin…which I most definitely need!!! 😜 you only have to use a small amount of foundation too, a little goes a long way. 

She finished my make-up and every time Sebrina looked at me she was shocked. I sat patiently in my chair and I got more and more excited!! πŸ˜‚ 

I got the ‘Magic’ foundation and the powder to match it. (You can’t get the Magic foundation without the Magic powder – they go together!!) I got the highlighter/bronzer set (AMAZING!) and an eyebrow pencil. A type of pencil I’d never seen before so I couldn’t resist! I parted with way too much money that day but I had no choice!! πŸ™„

If I was to compare the Charlotte make-up to the other more expensive competitors – well what can I say…there is NO comparison!! 😍 The highlighter/bronzer set is probably the best set I’ve come across. The highlighter is brilliant. This make-up is completely flawless. 

See a recent photo of myself and Sebrina below with my Charlotte make-up on me ⬇️⬇️⬇️ What do you think -Yay or Nay??

Charlotte Tilbury’s make-up made me feel perfect!! That’s the best feeling a girl can ever have!! 

Thank you Charlotte ❀️