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. 😪 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!! 😂 But yet I was delighted he did cuz I know I’d do the exact same thing!!! 😂
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. 😪
I was taking one last photo with him and I asked him the big question…”Liam, will you be my future husband”?? 😂 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”!!! 😱😂 Oh god I adored him!! The innocence of him!
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”. 🙏🏻🙏🏻🙏🏻
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. 🙏🏻🙏🏻🙏🏻
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. 🙈
The funeral was 2 days later. I was dreading it. How was I going to look at the family, what do I say??? 🤔
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. 💙
Goodnight, sweet dreams Liam. 💙