Fundraiser for Dundalk teen with rare syndrome

A GoFundMe page has been set up by the friends and family of 13-year-old Ruby Casey-Mulligan from Dundalk.

Ruby suffers from NEMO-NDAS, an auto inflammation disease that can cause a range of difficulties, including fever, chills, headache, fatigue, body aches (joint/muscle pain), skin lesions, rashes, swollen glands, mouth sores and chest pain.

The condition requires constant immunosuppression with the help of medication; however, the complications caused by the medication are so severe that she can’t continue taking them.

As a result, her parents Brian and Lauren have been left with no choice but to take her to Newcastle for a stem cell transplant.

The transplant has been in discussion for a number of years and has been put off due to trying different combinations of medicines.

In March, Ruby and her family were told to prepare to go to Newcastle for August, but recently that decision has been changed to mid-May 2023.

“We were supposed to go over in August and they said they wanted us over now, but she’s making her confirmation in May, so we said anytime after that we’d be good to go. We want her to make her confirmation with her class and then go from there,” said Ruby’s dad Brian.

“Basically, they will give her a new immune system. She will go through treatment to wipe her immune system as it is and then they’ll give her the donor’s cells and a new immune system.

“They told us we’d be there for six months, so what we have in our heads is that we’ll be over there until around November.

“When we go over, we have to pay for travel and accommodation for the six months.

“She’s going to be there for six weeks of an assessment as an outpatient, which means she’ll be in the hospital more or less every day but will be able to come home that evening.

“And then she’ll be taken in for treatment after the assessment and at any stage they could [decide] to take her in and then when she gets out post transplant, she’s going to need to be an outpatient again in the hospital.

“That could be a number of weeks or months to make sure she’s good to come back to Ireland.”

Money raised through the GoFundMe page will assist Ruby and her family with the sudden relocation and living expenses for the duration of their stay and Brain says they have been blown away with the response so far, (over €12,000 at the time of writing).

“It’s unbelievable, it’s just testament to the town really and you see it on a regular basis when [there’s a charity appeal] it just takes off, especially when there’s a child involved.

“People are so kind they’re amazing. It makes you proud to be from Dundalk when you see stuff like this.”

It is hoped that over the coming weeks a number of other fundraising events will be arranged, and people can keep up to date by following the ‘Rally Around For Ruby’ Facebook Page.

To donate to Ruby’s GoFundMe page visit: www.gofundme.com/f/rally
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