A young boy whose parents started a fundraising campaign which raised over €3 million to bring him to the US for “lifesaving” treatment will now be unable to receive the drug, his family has disclosed.
One-year-old Dan Donoher has type 1 SMA (Spinal Muscular Atrophy), the most severe form of a rare neuromuscular disease, which causes muscles to weaken over time.
In March his parents Niall and Aisling Donoher started the "Do it for Dan" campaign, to raise funds to allow the family to travel to the US to avail of an infusion of a drug called Zolgenmsa.
Some €3.3 million was raised through an online GoFundMe page, as well as local fundraising efforts in Ireland and abroad.
However, in recent days a set of tests taken as part of the process preparing for the treatment revealed the infant had contracted a rare virus, which caused him to develop antibodies that would prevent Zolgenmsa from being successful.
Only around five per cent of the population are susceptible to the virus, which the child contracted in recent months.
In a statement released by the Do it for Dan campaign, his mother Aisling said it had been “a very tough couple of days and very difficult to get our heads around”.
The family were "devastated when we got the results back," she said. Dan, whose parents are both Laois GAA players, had been diagnosed with type 1 SMA last December. Life expectancy for infants with the condition in many cases is less than 18 months.
“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,” she said.
“We would like to thank absolutely everyone who has supported us, donated, fundraised, ran, sang, and danced in order to give Dan a fighting chance at life, we will never be able to thank you all enough and what it means cannot be put into words,” she said.
“All we ever wished for our baby boy was that he got a chance and you made that possible,” she said.
The Donoher family has pledged to donate €1 million from the funds raised to a similar campaign for another child, Olivia “Livie” Mulhern, who is seeking the same treatment. Another large portion of the funds will be divided between several other families with children who have SMA type 1 in Ireland.
The remaining funds will be used to provide care for Dan, with some funds to be kept in reserve if further treatment to improve or reverse his condition becomes available in his lifetime.
Failing that the family will donate these funds to support people with SMA type 1 and fund research in the area.
In a statement, the “Better life for Livie” fundraising campaign said “our hearts go out to everyone close to little Dan,” and thanked the Donoher family for their “incredible gesture.”
The fundraising campaign for Livie had to date raised €550,000 of a €2 million target in an online GoFundMe page.
