Before Ruairí’s diagnosis in October 2019, I knew something was happening to Ruairí. It was difficult to explain his symptoms to the doctor. Ruairí was “changing” – like he was losing part of himself. It was heartbreaking. He was only 6 years old when he was diagnosed with a rare, genetic neurological disease. And I guess there’s just no way of describing how that feels. Our lives were shattered. The disease was progressing quickly. It robbed him of his smile, his voice, and his sight…everything. That’s when Make-A-Wish came into the picture.
Wishes to bring joy to kids like my Ruairí facing critical illnesses… Wishes to give parents like me a reason to smile, even when things are so tough.
Wishes that bring a community together to remember someone special. At this point, Ruairí was still able to walk. And because he was so full of energy we asked for a climbing frame. He loved to climb! We put it in the middle of the kitchen. We got rid of the kitchen tables and chairs. Sure who needs a table and chairs when you can climb in the kitchen! Ruairí and his brothers, Fionn and Tomás, spent a huge amount of time turning upside down and doing flips. Ruairí never fell. He would climb to the top and touch the ceiling.
It might sound like a small thing… but when your little boy is facing something so terrifying, it was tremendous. Ruairí also needed movement and sensory feedback. So, along with the climbing frame, Make-A-Wish provided a swing. It was hung from the roof of the house in the sitting room and had a cushioned seat that wrapped around him. Ruairí would climb into the soft seat… and it would wrap around him, like a hug.
We treasure the videos we have of him in the seat with Fionn. Can you picture my three boys, playing together on the climbing frame? It was during lockdown, so it was a lovely way to spend time together. We still have the frame, and the memories.
When Ruairí was diagnosed, our other sons were tested because the condition is genetic. Fionn also had the gene. But he had no symptoms, so he was to be monitored every six months. Ruairí’s body grew tired as the disease progressed. Then, Ruairí left us. Our hearts were broken. He passed away in our arms in June 2022 at age9. It’s been difficult for us all, going on without our Ruairí. The three boys were best pals and so close! Then in February 2023, Fionn’s MRI wasn’t what we wanted it to be. They were seeing changes, but he still had no symptoms. Fionn had time to get the treatment that Ruairí wasn’t able to get. We went to Manchester for a bone marrow transplant for Fionn to halt the disease. And Fionn is now 17 months post-transplant.
We turned to Make-A-Wish again for Fionn.
Like Ruairí, Fionn has always been so sporty… football, hurling, soccer… he was just a sports fanatic. Make-A-Wish granted him his wish as well: real soccer goals so he and his friends could all play together. We have a green out in front of the house. Fionn did his research… and the real goals were installed. But Make-A-Wish didn’t stop there.. They brought a party with ice cream and pizzas. And our local football team got loads of players to come and play against Fionn and his friends. It was a great day.
I will miss my Ruairí every moment, every day. But I know his life was so much happier, thanks to the caring people who support Make-A-Wish.
With all my thanks,
Ruth McDonnell
