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Sligo mother, Kathy Smullen, took to GoFundMe on Monday to raise money for accommodation whilst in Dublin, as her son with a rare condition called Hemophagocytic lymphohistiocytosis (HLH) receives treatment in Beaumont Hospital.
Mum to Joey Smullen, she wrote on the fundraising site: “We are having a crisis at the minute, Joey is in icu Beaumont on a ventilator for the last two weeks, he has had brain surgery to drain fluid off his brain and has a very rare virus called HLH, along with neutropenia and brain swelling,”
“I can’t leave him, the accommodation costs are crippling us….anyone who knows me knows that by setting this up that I’m at my last resort, any help would be greatly appreciated, I know times are hard for everyone, please help me stay with Joey, and please keep praying for our wonderful boy.”
According to Ms Smullen, doctors have said Joey has a 20pc chance of survival and the family has been with him at Beaumont Hospital since he was transferred here from Sligo General Hospital on July 3.
“We can’t find anywhere to stay. The first night we got here, we stayed in a hotel for a night for €160 and then we went to another hotel and they gave us a reduced rate of €130 from Tuesday to Friday,” Kathy told presenter Katie Hannon on RTÉ’s Liveline.
“On Saturday, they [the hotel] wanted €250 because they couldn’t offer us the reduced rate on a Saturday.”
“My family is coming up and down from Sligo, [both] my daughter and my other son.”
“We live in Sligo, there is no chance in hell I’m leaving my child.”
“It’s torture, we have to be here, I want to be here, If he wakes up, I need to be here to calm him down, to comfort him, and tell him what’s going on.”
“He went to sleep in Sligo, he’s hopefully going to wake up in Dublin,” said Kathy.
Three weeks ago, the 25-year-old who also has a brain condition called Agenesis of Corpus Callosum and is legally blind, woke up ill.
“On Sunday morning, he had a massive seizure, he had to be incubated and put into an ICU in Sligo.”
“Monday morning, Beaumont was contacted and he was transferred up here two-and-a-half-weeks ago.”
“We’ve been here everyday, we haven’t left him.”
Following Joey’s seizure, he was not responding to the treatments given to him, making his last resort chemotherapy.
“He’s been doing chemotherapy since Friday – aggressive therapy. They are giving it to him directly into his brain.”
Currently on a ventilator, Kathy said her son was given the last rites last Wednesday.
“He’s just the most amazing young man, he has fought through everything. They said he will never walk or talk when he was two months old. He’s independent around Sligo, he knows his bus route.”
“For him to end up here is so heartbreaking,” she said as she broke down in tears to the radio host.
“He’s the sunshine of the family.”
Meanwhile, in addition to the €21,000 donation made, listeners on Liveline have also offered to house the family.
“I’m absolutely blown away…I’m gobsmacked. The majority of people that donated are people who know Joey.”
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