Aisling Dan and Niall Donoher
Sad news has been announced this Sunday evening June 28 for little Laois toddler Dan Donoher's planned treatment in the US.
Baby Dan, son of Laois GAA players Niall and Aisling, was the focus of the #DoItForDan campaign that spurred on the Irish nation during Covid-19 lockdown to donate €2.1 million for his lifesaving treatment. In the end it raised €3.3 million.
The committee has announced that little Dan is no longer suitable for the treatment.
"The terrible news has been confirmed following a second set of tests taken, as part of the standard process when preparing for treatment. The results showed that Dan had contracted a virus (which only 5% of the population are susceptible to) sometime in the last few months which has caused him to develop antibodies that will prevent the infusion from being successful," they said.
Dan's mother Aisling said they were devastated to get the results.
"It has been a very tough couple of days and very difficult to get our heads around. The last few months have been surreal for us and although the news is very upsetting, we will never forget the kindness and generosity we received, and we could not be prouder of how our little boy touched so many people and bound so many communities together.
"We would like to thank absolutely everyone who has supported us, donated, fundraised, ran, sang, and danced in order to give our little boy a fighting chance at life, we will never be able to thank you all enough and what it means to us cannot be put into words.
"All we ever wished for our baby boy was that he got a chance, and you made that possible. Thank you to the committee, the volunteers and each and every person who helped our family, you did it for Dan. Tanbk your so much from the bottom of our hearts for your kindness. Thank you from myself, Niall and Dan," Aisling said.
The campaign had started in March. The money was to cover substantial costs for gene therapy treatment for Dan, who on December 6, 2019 was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) Type 1 and scoliosis.
The money is now going to help other children.
The committee have pledged €1 million of it for another little Irish baby, Olivia 'Livie' Mulhern, whose family and friends are running the A Better Life For Livie fundraiser, also for the Zolgensma treatment in the US.
"Shortly after the Do It For Dan campaign went live, a campaign called A Better Life for Livie also began, for a little girl Olivia Mulhern. Her family and friends are bravely fundraising for vital funds for Livie to travel to the US to receive Zolgensma. The Do It For Dan campaign will be pledging €1 million to Livie.
"A large portion of the funds raised will be divided fairly among SMA Type 1 children for their families to provide them with the best possible care and give them the best quality of life they can achieve along with a portion going to the SMA Ireland to help support all SMA sufferers.
"The remaining funds will be used to provide Dan with the best possible health care, support and facilities that he will require during his condition," the committee has stated.
There remains some hope for treatment for Dan.
"As gene therapy is continually developing and evolving a large portion of the funds will be held in reserve should a treatment become available in Dan's lifetime that can see his condition improved or reversed. Failing this the funds will be released to support additional SMA type 1 sufferers, research and pre screening for children in Ireland," they said.
Committee Chairman is Brian Quigley.
"Aisling is my sister and Niall one of my oldest friends. When I asked for support from some of mine and their friends I never envisioned what it would be. The committee and I always believed that when we sat down to raise the funds we would 'Do it for Dan' but I never thought it would be something that would bind so many people and in particular GAA, LGFA and sporting communities across Ireland in the way that it did.
"With what we've done we've given Dan the best shot at life. Dan has raised the profile of SMA in Ireland for all SMA families and sufferers. Hopefully with the support Livie can have the best quality of life possible for her, and finally, hopefully all the work will lead to the fast tracking of Zolgensma in Ireland and possible much earlier screening for SMA children in Ireland. Thank you so much to everyone, we did it for Dan," Brendan Quigley said.
Below: A happy Dan in a recent video.
Subscribe or register today to discover more from DonegalLive.ie
Buy the e-paper of the Donegal Democrat, Donegal People's Press, Donegal Post and Inish Times here for instant access to Donegal's premier news titles.
Keep up with the latest news from Donegal with our daily newsletter featuring the most important stories of the day delivered to your inbox every evening at 5pm.