A Better Life For Rí (SMA Type 1)

Help Us Create a Better Life for Rí

It’s hard to put into words what our son Rí has endured over the past 15 months and the impact it has had on our family. We are parents to three wonderful boys: Cohen, Lou, and Rí. Unfortunately, Rí was born with a rare genetic condition called Spinal Muscular Atrophy (SMA) Type 1. Without treatment children with SMA1 rarely survive beyond their second birthday.

Thankfully, we were fortunate enough to secure Zolgensma, a lifesaving treatment that has given Rí the chance to fight. However, his journey has been incredibly complex, and he faces significant medical challenges every day. We have come heartbreakingly close to losing Rí multiple times, but he continues to defy the odds and bring joy to our lives.

Until recently, we lived in rural North Cork, where Rí's medical needs made life extremely challenging. Due to his condition, he cannot travel safely in a car, leaving us isolated. During emergencies, we relied heavily on-air ambulance services and endured agonising wait times for medical help. On two separate occasions, we had to perform CPR on Rí ourselves, waiting 40 minutes for paramedics to arrive, this was a terrifying and unimaginable experience for any parent to have to go through.

As a result of these close calls and the strain on our family being split so often during his extended hospital stays, we made the incredibly difficult decision to sell our home and relocate to Dublin. Being close to Temple Street Children’s Hospital, the new children’s hospital, and the many critical services Ri depends on is essential for him to survive.

Buying a house in Dublin was an incredibly difficult and emotional journey that required immense sacrifices. To give Rí the best chance at life, we had to leave behind everything we held dear—our family, friends, and the community that had been our home. We uprooted our lives, leaving our careers and the schools that our other children loved. We sold possessions, cars, and ultimately our home, pouring every penny we had into making this move possible.

Although we are relieved to now be in Dublin, where Rí is closer to the medical care he needs, the transition has been a profound challenge for our family. Despite all we’ve given up, our focus remains on improving Rí’s quality of life as much as possible, ensuring he can thrive surrounded by the love and presence of his family. Rí is very fragile, and most days, it’s difficult to even bring him downstairs. As a result, one of us must stay with him upstairs all day, separating him from the rest of the family.

Rí’s name means “king” in Irish, and it couldn’t be more fitting for him. He is the heart of our family, our little warrior who faces every challenge with strength and grace far beyond his years. Rí has shown us what true resilience looks like, and his ability to bring joy to everyone he meets is nothing short of extraordinary.

It feels incredibly vulnerable to share our story and ask for help, but we know this is what we need to do for Rí. We are reaching out for your support to give him the best possible quality of life. Your kindness and generosity will help us create a home where Rí can thrive, a place where he can be safe, comfortable, happy and surrounded by the love of his family every day.

Thank you for reading our story and for considering helping Rí!