A mother pleaded with politicians from all parties in the Dáil to fund a potentially life-changing therapy for her young son.
Harry Bulman, 5, from Youghal, Co Cork, has spinal muscular atrophy (SMA) and Spinraza is the first drug to treat this rare neuromuscular disorder.
The little boy is one of 25 or so children in Ireland affected by SMA and without treatment many will deteriorate and die.
Rebecca said they were told that Harry would only live until his late teens or early 20s.
“Spinraza would greatly benefit not only Harry's life but the lives of his entire family,” said Rebecca.
The tearful mother said she did not want to watch her son waste away and die when there was a life-saving treatment available.
“I beg you not to allow this go on any longer,” she said.
A number of SMA families marched to the Dáil to present a petition with almost 100,000 signatures asking the Government to fund the Spinraza for their loved ones.
Calls have been made in the Dáil to provide a life-changing drug to children suffering with a rare genetic condition.
Marking World Rare Disease Day, Fianna Fáil's deputy leader Dara Calleary raised the plight of a those who have Spinal Muscular Atrophy (SMA) and who are calling for the HSE to fund the drug Spinraza.
Tánaiste Simon Coveney said he would speak to Health Minister Simon Harris about funding Spinraza but he said the drug manufacturer Biogen have not offered the drug at a reasonable or affordable price.
"We want our children and the families that love them to get the support of the State," said Mr Coveney but he added that value for money must be achieved or else other patients could miss out on treatments.
But Mr Calleary questioned the figures provided by Mr Coveney after he claimed it would cost €600,000 per patient for the first year and €380,000 thereafter to make the drug available.
The Fianna Fáil TD said the prices quoted "are way out" and told the Dáil: "It strikes me that the HSE are deliberately misleading people about the cost of the drug."
Sinn Féin Spokesperson on Disability Rights Caoimhghín Ó Caoláin joined protesters outside Leinster House today to call on the Govt to provide #Spinraza, crucial medication for those with Spinal Muscular Atrophy.— Sinn Féin (@sinnfeinireland) February 28, 2019
Sinn Féin will continue our support of all those with SMA! pic.twitter.com/w7jG2y0T3D
Sinn Féin health spokesman, Caoimhghín Ó Caoláin said only Ireland, the UK and Estonia are refusing authorisation of the drug which could help around 25 children who suffer with SMA in this country.
Mr Ó Caoláin said he is "sick and tired" of appealing to the Government the issue.
Mr Coveney told the Dáil that the Government is "very keen" to find a middle ground on the price of the medication but they cannot ignore HSE recommendation to ensure that they are spending appropriate money on drugs for rare conditions.