By Carmel Hayes
THERE is absolute heartbreak for little Dan Donoher and his family, following news that his lifesaving trip to the USA has been called off.
The ‘Do It For Dan’ committee confirmed over the weekend that the much-loved Laois boy cannot travel, after contracting a virus that would prevent the success of a planned infusion of the drug Zolgensma.
It is devastating news for parents Niall and Aisling Donoher from Ballybrittas and thousands of friends and supporters including so many from County Carlow, who raised over €2m for his medical treatment in a massive fundraising campaign that began last March.
With characteristic kindness, Niall and Aisling together with the committee have confirmed that the Do it for Dan campaign will pledge €1m to the fund for Livie Mulhern, a 10-month-old with the same condition as Dan. They will also donate further funding to other Irish children with the rare spinal condition.
The terrible news for the Donohers was confirmed following a second set of tests, 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, at some stage over the past few months. The virus meant he developed antibodies that will prevent the Zolgensma infusion from being successful.
In a heartbroken statement today, Aisling said: “It has been a very tough couple of days and very difficult to get our heads around. We were devastated when we got the results back. 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. Thank you so much from the bottom of our hearts for your kindness. Thank you from myself, Niall and Dan.”
The money raised by Do it for Dan was for expensive life-saving gene therapy treatment for the one-year-old, who was diagnosed with a rare genetic neuro-muscular disease called Spinal Muscular Atrophy (SMA) Type 1 and Scoliosis last December. A total of €3.3m was raised, with the addition of contributions to a gofundme page and other donations.
Shortly afterwards, a similar campaign began for little Olivia ‘Livie’ Mulhern, who has the same condition as Dan. Called ‘A Better Life for Livie’, the campaign has raised just over €550,000 so far for Zolgensma treatment in the USA. The Do it for Dan campaign will give €1 million for Livie’s treatment.
There are only a few children in Ireland with SMA type 1. A large portion of the funds raised by Do it for Dan will be divided fairly among SMA type 1 children so that that they can receive lifesaving treatment.
The committee said that remaining funds will be used to provide Dan with the best possible health care, support and facilities that he will require due to his condition.
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.