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Bumbleance - the Official Children's National Ambulance Service of Ireland is a crucial service for sick children. Photo: Andy Gibson.
Bumbleance - the Official Children's National Ambulance Service of Ireland is a crucial service for sick children. Photo: Andy Gibson.

Mum’s gratitude to BUMBLEance

Cork charity Bumbleance have made an enormous difference to the life of Finn Lucey from Ballyvourney and his mother Sinead is raising funds as a thank you.

“It's with Bumbleance help I know that one day, when I put Finn to bed, he will turn around and say those magic words that I so long to hear......I love you mummy,” she said.

Seven-year-old Finn was born with the rare condition Pfeiffer Syndrome, where the bones in his head fused prematurely on birth. This led to many serious operations where they removed his skull cap and re-modeled it allowing room for his brain to grow.

His syndrome is so rare, with only four cases in Ireland in the year he was born, that the family have struggled to get him the support he needs. Finn is behind developmentally and non-verbal because of all the operations but the family have been told he could thrive with the right support.

“All of the time I have been fighting for supports, fighting with the HSE and getting nowhere,” Sinead said. “I have gone to politicians, you name it, I’ve tried it.

“The thing is, if Finn had a more common condition there would be an association or group, even though it can still be hard to access services I know. But we had nothing, we are not in contact with any other parents who have children with this condition.” 

The struggle to help Finn was hugely draining: “Everyone keeps telling me Finn is a very intelligent little boy, he has huge potential, but he is not getting the speech and language support and occupational therapy that he needs.” 

That is where the Cork-based charity has stepped in.

“I knew Bumbleance were an ambulance service but what I didn’t know that a part of the charity is the Saoirse Foundation,” Sinead said. “That acts as an advocate service for children with very rare syndromes and life-limiting illnesses in Ireland.

“So I got in contact with Tony Heffernan and Bumblence and they said they absolutely could help us out. They are fighting to get services Finn and are doing a really good job. We are only with them a couple of months, they are stepping in when nobody else was.

“It is a huge comfort. They have taken it out of my hands and I am seeing progress straightaway, they are opening doors for him.” 

Sinead wants to help repay the help they have given her, so she and her two sisters and running a half-marathon in Dingle last month. She works with husband Gordon in 9 White Deer Brewery, which is co-owned by Gordon and Don O'Leary of The Mills Inn. When Don heard about their running plans he suggested a fundraising barbecue, which takes place this Sunday at The Mills from 5pm.

“We’ll have burgers and other food, a band, face-painting, kids activities and there will be a bumbleance ambulance there as well,” Sinead said. 

“There will be a raffle, people in Ballyvourney couldn’t give me enough, so we have loads of prizes. We are just trying to get as much money as possible for Bumbleance and everybody’s invited.”