By Eleanor Ryan | Corporate Fundraising Executive
Dear friend of Barretstown,
I’m Mebh. And I’m someone whose life has been profoundly impacted by you and your support of Barretstown. You sprinkled magic on my children’s lives, at a time when they needed it the most. And I couldn’t be more grateful to you for that. I remember this visit to Santa in December 2019, so vividly. My eldest child, Muireann, was almost 4, Seán just 2 and I was expecting our third in February. We were so happy. We really hadn’t a care in the world. Until a shock diagnosis, knocked us off our feet. And while I didn’t know it then, it would be another two years before we’d feel that sense of lightness, fun and joy again.
When we’d get to experience our first camp at Barretstown. And that’s why I want to share our story. Because I know, right now, there’s another family who desperately need the magic that only Barretstown can give. That are going through hell and back as their child battles cancer. It was Christmas Eve, when Seán started showing signs of Bell’s Palsy – paralysis on the right side of his face. We took him to Temple Street where he was given an antibiotic. Following this, we had to go back for two further appointments to follow up, during which time I’d had Cillian. But there was no improvement. So, they referred him to Neurology. And then Covid happened. Lockdowns kicked in and everything got pushed out.
We were concerned about the Palsy but nothing would prepare us for what happened next. At the end of May, things suddenly deteriorated. Seán started walking like he was drunk. We were referred straight back into Temple Street where they scanned him right away. And that’s when they discovered it - a large tumour by his brain stem. A type of bone cancer called Ewing Sarcoma that is rare in children of his age. And even more so, to be in that location. It was devastating. Such an incredible shock! We were all trying our best to get through the start of Covid lockdowns, like everyone else. And then it was like this bomb went off in the family. And to this day, I don’t know how we all got through the months that followed. Seán had a massive eight hour surgery in Temple Street to remove the tumour. And afterwards, it was like he’d been in a car accident. He didn’t walk for 6 weeks, he barely spoke and was just so upset and distressed all the time. He couldn’t understand what was going on. And you couldn’t explain it to him. He was only 2. Then he was transferred to Crumlin to start a 14-round course of Chemo, which was horrifically hard on him. And on Muireann too. She was only 4. From her perspective, one evening her brother – her best friend - just upped and disappeared. We’d do shifts, me and JP. I might go in for 24 hours, bringing Cillian with me – as I was still breastfeeding him. Then I’d come home, and swap with JP. We couldn’t really have friends and family in to help, because of Covid, although they did give us all the amazing support they were able to. Especially my mum. She was brilliant. Even though she was over 70, she said “I’m in your bubble now. And that’s the end of it.” I don’t know how we’d have managed without her. It was just so isolating. And that’s the thing about your support of Barretstown.In November 2020, we all moved to Essen in Germany for nine weeks while Seán underwent proton radiation therapy. It was extra difficult because they had started Covid lockdowns again, and Seán got very sick while we were there. It’s almost surreal to think back on it now. Were we really in Germany in the middle of a global pandemic with our child having radiation? We got through it, just about. And got home on the 21st of December 2020, just in time for Christmas. It was such a relief to be back. But hard too. And we had to stay in complete isolation from everybody. No visitors whatsoever. It was a lonely, hard Christmas. Then in the New Year, Seán did it! My unbelievably brave little boy finished his treatments and had his final round of chemo in February 2021. And it’s worked. He’s in remission. But the journey to building back up his strength, over the months since, has been slow. He has been left with some long-term challenges. He has lost the hearing in his right ear. He still has the Bell’s Palsy and can’t close his eye on the right side. And he’s been diagnosed with a growth hormone deficiency. As well as dealing with these things, I suppose the reality of all that happened fully sunk in for all of us too. And for two years, it had been relentless for Seán. Then, at the most perfect time, along came Barretstown. And it sprinkled a little magic back into our lives. Thanks to you, and people like you.After all my family had been through… … I can’t tell you how good it felt, to have something happy happen. It was November when we went to camp. The whole place was decorated like a magical Christmas wonderland for the children, as so many wouldn’t be able to go and visit Santa anywhere else due to Covid. The kids met Santa and just had such a ball. To see Seán, Muireann and Cillian having so much fun together – it was everything. Our visit to Barretstown came at just the right time for us. We felt totally safe. Both with the Covid precautions and knowing that the medical staff and Med Shed were there if we needed anything. I can’t explain how much the kids loved it. Their excitement levels were just through the roof!! We all stayed together in bunk beds in the same room in the cottage – which was a huge novelty. Like we were having this big sleepover adventure together. And doing all these fun activities together, as a family. No one missing out. We were together!The kids had the best time of their lives. And because it’s only for families like ours, who’ve been through things like what Seán’s been through, it made it extra special for them. This amazing positive experience out of all they’d gone through. As a mum, I can’t tell you what it meant to me to see my children’s faces light up. To see them jumping around on stage - dancing and singing. Hearing their laughter and giggles, it was so special. For the first time, in so long, we all just had pure fun. It is the most incredible gift. And your support of Barretstown is what makes it happen . We went home a different family. Restored. Lighter. And last Christmas – Christmas 2021 – was filled with magic again. We were us again.We’ve been back to Barretstown since, which has been amazing. And such a welcome break. As even though he’s in remission, with his ongoing issues, hospital is still very much a part of Seán’s life. He’s back in Crumlin or Temple Street every couple of weeks for something. Having a trip to Barretstown to look forward to, breaks all that up. Gets everyone through. For Seán the best bit is seeing and interacting with other kids – he just loves it! He’s missed so much of that. They do these amazing activities like superhero training. And film making, where he’s had the chance to make his own movie and then see it played up on the big screen on the Saturday night.What he survived and got through is incredible. And was horrifically hard. More than anyone I know he deserves happiness, joy and fun now. And all the magic the world can muster. Barretstown gave him that. Thank you for supporting Barretstown.Yours with thanksMebhProject reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.
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