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Fundraiser for six year old girl with rare condition

By David Hennessy

A fundraiser for 6 year old Sarah Connery is to take place this Saturday 10 June at Jameson’s Pub, Mollison Way.

Sarah has been diagnosed with a rare genetic cancerous disease called Wagner’s Syndrome which affects different parts of the body, in Sarah’s case it’s affecting her eyes.

Once a month Sarah is on a low dose of Chemotherapy as well as much medication daily to help prevent cancer developing.

Sarah is due an operation in Great Ormond Street Children’s Hospital London, hopefully to improve her eyesight but there are no guarantees.

Sarah’s parents Patrick and Sarah Connery had gone through so much already with the passing of their son Joseph aged 4, five years ago to another rare genetic disease.

Due to Sarah’s condition the family home needs to be upgraded to make it a safe environment for Sarah.

This means lighting needs to be added throughout the house especially the stairs, and their back garden needs shelter especially during the summer as due to all the medication and infusions, Sarah’s eyes cannot take direct sunlight.

A big fundraiser at Jameson’s, as well as a gofundme page, looks to raise funds for this work.

Saturday’s event will have auctions and raffles as well as entertainment from Slim Attraction.

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Prizes for auction and raffle include donations from big names like Nathan Carter, the cast of the Young Offenders and Cork GAA while someone can also get two Arsenal tickets.

Sarah’s family are originally from Belgooly, Co. Cork and Kilmallock, Co. Limerick.

Sarah’s mother Sarah Connery told The Irish World: “It should be a really great night.

“We’re all looking forward to it.

“Hopefully it will raise money to help Sarah and we can make things happen in our home like extra lighting because she finds it very difficult with bright light or dim light, so we have to get it right so she can see coming down the stairway at home and also playing outside in the back garden. We need to build some kind of structure so she can play safely without the sunlight blinding her even more than she already is.

“We need to accommodate her.

“We need extra lighting so she can get up and down the stairs without going down on her bottom or ‘mummy’ having to help her.

“That’s what we want to do. We want to keep giving her as much independence as we can.

“She learned to ride a bike last year,

“This year we got the bike out of the shed, she can’t even get on it.

“She can’t see to ride the bike now.

“It’s so sad to see a little girl start crying, ‘Mummy, I can’t do this no more’.

“And yet she was riding her bike this time last year.

“It’s so sad.”


The family have already lost their son Joseph.

“We had a little boy who sadly passed away five years ago.

“He was born with a fatal disease and he was four when it took him.

“It was awful.

“It is hard.

“We went through everything with little Joseph and then we were just getting back on track.

“I just took Sarah to a routine eye appointment at Moorfields and all of a sudden we had doctors and nurses running in all directions because at first they thought she had glaucoma or cataracts.

“They initially diagnosed her with uveitis which was kind of on the right track.

“She was then referred to Great Ormonde Street and that’s when they diagnosed her with Wagner’s disease which is causing her sight loss.

“We had never heard of it.

“Apparently there’s only a thousand people in the world with it, it’s very, very rare.”

It has been very hard for a family that was really still grieving the child they lost when they were hit with more difficulty.

“We came out of Great Ormond Street the day they diagnosed Sarah and we looked at each other and it was like, ‘Why? Why us?’

“You go through one thing and then you get something else thrown at you and it hits you like a brick.

“They don’t know enough information about it because it is so rare, there’s not a lot of research on it.

“You think, what is this going to hold for us in Sarah’s future?

“But she’s coping really well with everything.

“She’s at school. She loves school. School have been absolutely amazing, provide everything that she needs along with the vision impairment team at Harrow.

“She’s missing a bit of school but she’s a very bright kid.

“She questions about everything.

“We reckon she’s going to be a detective.”

Sarah says she can’t fault St Bernadette’s Catholic School and Saturday’s fundraiser is organised by another mother at the school who is also landlady of Jameson’s.

“It’s amazing, there’s a very strong community down our school anyway.

“We’re like a family down there.

“The children have been great understanding Sarah’s problem, the parents are there if you want to talk to them.

“It’s a really lovely community down there.”

Sarah also has two amazing sisters Kacey and Khloe.

“She’s got her sisters as well. They are brilliant, they are absolutely brilliant with her.

“They’re just so tight knit.

“They’re always watching her.”

There has also been fundraising for Sarah by her family in Ireland with a cake sale in Carrigaline, Co. Cork.

“Sarah’s been in the Limerick Leader, the Echo, the Irish Independent, she’s all over Ireland.

“She’s going to be a celebrity when she goes over in the summer.”

While the family are looking to raise £20,000 with their gofundme page to make adjustments to the home, there is a separate gofundme page set up by the family in Ireland looking to raise €8,000 to take Sarah to Disneyland.

“They want Sarah to get to Disneyland.

“If her sight was to deteriorate, she wouldn’t get to see that sort of thing.”

The condition means Sarah now needs to use a cane.

“It’s a lot for a little one to go through.

“The rehabilitation officer has given her a cane now that says, ‘I can’t see as well as you, move!’

 “So she carries a cane now as well.”

Sarah is waiting for an operation but there are no guarantees it will improve Sarah’s sight as hoped.

“We don’t know what future this disease is going to cause us.

“We really don’t, the worst of the worst is she could lose her sight.

“That’s cruel, to be able to see everything and then live in the dark.

“You wouldn’t want to do that, nor would I, let alone a little six year old girl.”

Will little Sarah be there Saturday night? “She knows what’s going on but unfortunately laws are laws and she can’t be there.

“I’m sure she’ll hear all about it and we’ll get loads of pictures.”

Fundraiser takes place this Saturday 10 June at Jameson’s, Mollison Way from 6pm.

You can also give by clicking here. 

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