'The support has blown me away' says father of boy with rare illness as they fundraise for UK treatment

In October 2024, seven-year-old Tomás Fahy, of Ballinasloe, Co Galway, was diagnosed with Aplastic Anaemia.

This is an incredibly severe illness that is caused by the bone marrow not functioning properly, as it fails to produce enough of all three types of blood cells – red, white and platelets. Typically, Aplastic Anaemia affects around 2 people for every one million in the population. It is deemed as an ultra rare disease.

This month, young Tomás will undergo a bone marrow transplant in the UK, with the help of his big sister Róisín, whose bone marrow luckily matches his. Róisín is a final year student in the University of Limerick, where she studies Environmental Science.

This transplant is Tomás’ best chance at returning to a regular life of a child his age.

Tomás and his parents Úna and Padraig, will be spending a minimum of three months full time in the UK while he undergoes this necessary treatment.

While the medical treatment is covered by the HSE, there are many other costs involved, including loss of earnings, travel and the costs of accommodation while caring for Tomás. Meadbh, another sister of the young boy, set up a GoFundMe, with the hopes of easing the financial burden that has been placed on their family. 

Along with this, 25% of funds raised will also be donated to the Aplastic Anaemia Trust UK because at present, there is no Irish Trust in existence for the illness, due to its rarity.

Padraig Fahy, father of Tomás, picked up the phone in the waiting room of Crumlin Hospital, where he and his wife, Úna, were waiting as their youngest child was having Hickman inserted.

This is a type of central line that is tunnelled under the skin so nurses can then use the line to give medicines or take blood samples. 

The father-of-four spoke about Tomás' journey, and how his diagnosis came to be. 

Padraig credits "woman's intuition" to Tomás' quick diagnosis, as Úna began to observe bruises and bumps on her son's body when swimming. 

Speaking on this, he said, "He still is an active boy, so, he got bruises and bumps, but they were slow to heal, and just her inner voice, her intuition said, 'Listen, I better go to the doctor'. She went into her local GP, Dr Jennings in Marina house."

As soon as the doctor met with Tomás, she sent him to Portiuncula University Hospital for blood tests. This occurred just four months ago, and since, the Fahy family's world has been turned upside down. 

"As soon as they did the blood tests, alarm bells rang. It's all happened quite quickly," he spoke, and after ruling out all other illnesses, Tomás was then diagnosed with Aplastic Anaemia. 

Tomás is a warrior, and the seven-year-old has not let this control or dictate his life, along with the help of his positive and supportive family. It is clear that we could all learn something from the boy, who continues to live life to the fullest. 

Up until last Friday, February 28, Tomás was attending school, despite receiving weekly blood transfusions and made no complaints, even when getting up at 6:30am to get ready for school while in hospital.

READ MORE: Gardai rush to scene after 'incident' at primary school which leaves one child hospitalised

However, they boy did have one issue, with Padraig saying, "They bring in match attacks (to school) on a Friday, so his biggest concern was every Friday, trying not to miss that."

Tomás is a fighter, and has taken this all on as best he can, with his own father commenting on the incredible "resilience" he has and what "great care" they are receiving from the medical team. 

It is every parents' worst nightmare to receive the news that the Fahy family did, but it has only made them stronger as a unit. 

When asked how they are all coping with the news, Padraig gave a wilful message. 

He said, "I suppose as a parent, there's an inbuilt instinct in us all to take care of our off-springs, you know. When one of them has a difficult, life changing illness, someone couldn't communicate to me or tell me how to do it. You just find that parental instinct in you that goes, 'Yeah, I'm fighting for this child, I'm going to take care of him', I'm also aware that my mindset is key to the process.

"They've done lots of research (Tomas' medical team), and they said one of the things they see when they look at families of who does well and who does the best, is, where there is humour, positivity, comedy," Padraig concluded. 

The family's GoFundMe has currently raised €27,323 out of their €35,000 goal. This was organised to give the family some security, as the road to recovery is a long one ahead. 

"The support has blown me away," said Padraig. "It brings up a vulnerability for me, seeing what people are willing to do."

Along with the fundraiser, Róisín Fahy, sister and donor to Tomás, will be holding a table quiz in The Scholar’s Club of the University of Limerick on Thursday, March 6. 

Meadbh Fahy, another sister and organiser of the GoFundMe, will be running the Dublin half marathon on Sunday, March 30, in aid of her little brother. Their cousin, Connor, will then too be running in the Limerick half marathon on Tuesday, May 6. 

Tomás' case went from moderate to severe in January, just under three months after his diagnosis, leading to the scheduling of his surgery. 

"It has made me re-evaluate what is important in life," his dad said, and laughed as he stated, "He's going to be grateful to his sister. He's going to be carrying around a good bit of Roisin in him."

Tomás, who will turn eight in the middle of the procedure process on March 30, is a funny and caring little boy who loves to dress up as a policeman. Donations to the cause, no matter the amount, will make a meaningful difference in his recovery, so he can go back to being a care-free and innocent young boy. 

Above all, it will guarantee that each Friday in school he can go back to playing match attacks with his friends. 

Taking to the GoFundMe page, Meadbh said, "Together, we can give Tomás the best chance of a healthy, happy future as well as contributing to vital research for Aplastic Anaemia through the Aplastic Anaemia Trust."

To donate to the lovely Tomás and his incredible family, please click here.