'He’s had such a rough ride': Fundraiser launched to help Cork toddler born with rare genetic condition

A fundraising campaign has been established to support the conversion of a home to facilitate the medical needs of a Cork toddler.

Rí Gannon, who is 15 months old, was born with a rare genetic condition called Spinal Muscular Atrophy (SMA) Type 1, which impacts his ability to move, sit up without support, breathe, eat and swallow.

While his medical team was capable of securing a life-saving medicine for Rí called Zolgensma, the Gannon family made the decision to relocate to Dublin to be closer to Temple Street Hospital in Sandymount, as a result of his incredibly complex journey.

Speaking to The Echo, Elliot Gannon detailed what his son has had to endure, sharing that on a number of occasions the family nearly lost Rí due to complications with his condition.

Whilst living in North Cork, the family was a significant distance from an adequate healthcare facility capable of dealing with Rí’s SMA, leading to their decision to sell their home and move county.

“We were so stranded in Kanturk – we had one incident where we had to bring him to an appointment in Mallow and on the way home he stopped breathing in the car. We had to perform CPR, and we had to get a helicopter to come to the side of the road,” said Elliot.

“It just became too stressful – the family was split so often, moving was the right thing to do, for the other two kids as well.

“This [house] we’re in, the family heard our story and wanted to help. They let us move in early before we even bought the house – their mother was from Cork, so it was like it was fate.” 

Elliot went on to say how Rí is a very happy child despite his condition, who loves spending time and laughing with his older brothers Cohen, 7, and Lou, 4.

“He’s just so happy – everything he goes through, he’s had such a rough ride, but he’s always smiling.

“We were so scared with the move that he would end up in hospital again – but we’re lucky," added Elliot.

Due to his condition, Rí is confined to an upstairs bedroom, leading to the family’s plea for help in converting the 1950s home to implement modifications to support a fully accessible downstairs bedroom, which would enable Rí to spend more time with his brothers and parents.

“We spent everything just to get to Dublin, so it’s really hard to be so vulnerable and to put out the GoFundMe – but we don’t know what the future holds,” said Elliot.

While additional fundraising efforts have been undertaken by Dornan Engineering, Elliot’s place of work, the online fundraiser currently stands at over €25,000 raised out of the €150,000 target. 

To make a donation to the fund, see the GoFundMe page here.