Robbie Phelan is just like any other fifteen month old, in the sense that he is bright and bubbly, and full of smiles.
But on the 24th of October last, after extensive tests, Robbie was diagnosed with the rare genetice disease Mucopolysaccharidosis type 1, better known as Hurler Syndrome.
Emotionally, and finacially, Robbie’s parents Martin and Claire now face a long and difficult road ahead as their baby boy receives his treatment.
The launch of the Robbie Phelan Fund took place on Friday February 7 in O’Loughlins Hotel, Portlaoise to help raise awareness of Robbie’s condition and support for the Phelan family from Castletown in County Laois.
Hurler Syndrome is a disease of the metabolism, whereby the body cannot produce the lysosomal enzyme needed to break down sugar. Without the enzyme, the sugars build up in the body and cause damage to the organs, particularly the heart. The disease affects 1 in 100,000 globally, but is especially prevalent in Ireland where incidences are as high as 1 in 371 newborns.
Brendan Peters, family friend of the Phelans and Chairman of The Robbie Phelan Fund Committee, said that treatment will be long-term for Robbie.
“Robbie needs a lot of treatment and care, probably for life, so this is why we put the fund together. The money raised will be used to enhance Robbie’s ability to endure this illness. We’re hoping that we get as much help from the public as possible,” he said.
GAA President Liam O’Neill was the Guest of Honour on the night and said that he was delighted to play a part in helping Robbie and his family.
“It’s an unfortunate situation that the young man is in, there’s no doubt about that, but the great thing about this community is that the people rally around and help one another in times of difficulty.
“I’m here this evening to speak on behalf of the wider gaa community and to pledge our support for this fund. So if there’s anything I can do to help, don’t be afraid to ask,” he said.
Parish Priest Fr Willie Hennessy said that he was impressed by the effectiveness and the efficiency of the committee behind the fund.
“From the parish point of view, we’re here to support a family who have found themselves with a very ill child.
“The greatest test to any society is in its care for the vulnerable and the sick, and we come here tonight to do that, to support the parents, to support the family, and to help Robbie through his treatment.
“We’re here not just in a financial way, but spiritually and socially, to support and help them,” he said.
The committe members of the Robbie Phelan Fund are holding a fundraising event in The Racket Hall, Roscrea on Sunday March 16 at 8.30pm.
Entertainment on the night will be from Damien Bowe and The Vows with special guests including Carmel Minogue, Billy Dollard, Valerie McGovern, Christy Phelan, Kieran Scott, Bernie Coss and many more.
Tickets are €10 and are available from any committee member. Donations can also be made in any Bank of Ireland Branch nationwide. Please use the following bank account details BIC No BOFIIE2D IBAN No IE75 BOFI 9018 2910 8478 97 Reference Number 4683.