Midlands family taking it 'day by day' - a year on since DoItForDan
Dan Donoher celebrated a big milestone recently that his Midlands parents had feared he might never see.
The handsome little boy, son of former Laois Gaelic footballers Aisling and Niall Donoher has celebrated his second birthday, defying life expectancy for his debilitating condition SMA Type 1.
It is a year since #DoItForDan spurred Ireland into raising €3.3 million for urgent new medical treatment in the US.
Devastatingly, just as all seemed possible, with flights booked, Dan was found to be incompatible for that treatment.
However since then, with another drug and all the special care his parents can give him, Dan is now able to sit up and even eat by himself for a special few minutes every day, as seen in this lovely photo below.
But life is tough for him, and the future is hard to think about for his family.
Aisling spoke to the Leinster Express just after Dan’s 2nd birthday on March 28.
“It was a very small celebration, just ourselves and our parents, and a cake from Bernie Gorman who gives us one every year as a gift for Dan,” she said.
They are grateful for the many well wishers and cards.
“People haven’t forgotten Dan. I am constantly asked how he is. We don’t take that for granted. It is so lovely. To know that he is in everyone’s thoughts and prayers means the world to me and Niall,” she said.
They shared happy photos of the day, but Aisling says the difficult moments are never shared on her Instagram.
The toughest is Dan’s trip every four months to Tallaght hospital to receive the drug that is improving and lengthening his life.
Spinraza, a drug for Spinal Muscular Atrophy is injected by lumbar puncture. Dan began receiving it in January 2020, a month after his diagnosis.
Below: Dan holding the miracle drug, after a treatment in Tallaght hospital.
“Dan’s motor neurons are dying every day, and SMA Type 1 children get progressively weaker. At eight months he was like a newborn, he had lost the ability to do anything, he was so floppy. This drug works on a back up gene and gives him a certain amount of neurons.
The hospital day is tough.
“It is a really hard day on Dan. He is so small, they give him a bit of cream before the injection. It is a long day for him, he gets bloods, urine, physio and occupational therapy and a lot of assessments. But we are very grateful for the treatments,” she said.
“Now seven doses in, Dan is rolling around on the floor. It is fantastic. He is able to sit at a bench swinging his little legs. He sat up for 10 minutes the other day and it was incredible for us to see.
“It is our favourite part of the day. I put on his pyjamas and put him on the bench with his drink and some cheerios. He sits by himself picking at the cheerios, looking so normal. We love that part of the day, we just sit and stare at him,” she said.
Dan regularly gets to ride on a tractor too.
“He loves being outside all the time. He loves the farm, Niall’s dad has a farm next door. Dan has a special chair on the tractor, and Niall puts it on the back of the go-kart too. He loves water too, he’ll splash a bowl of water everywhere.
“He is Peppa Pig obsessed. He doesn’t bother too much with the toys, but he will be in hysterics laughing at the cartoons,” she said.
Every day is hard however.
Recently Dan was placed on breathing support at night, a permanent step as the disease has progressed. He must also be put into a brace at night to prevent dislocated hips.
Every morning before breakfast fluid must be cleared from his little lungs. He then must spend some time in a ‘stander’ to keep his legs from stiffening and help bloodflow.
“While he is doing really well, he still has a lot of struggles. The breathing support was a huge knock for us and our family. He looks great and to hear he needs to go on it brings back the reality of SMA Type 1,” she said.
Dan’s condition is so rare that no-one knows how long he will live as he is breaking new ground.
“He is only the seventh child in the country diagnosed. There is no-one to compare him to. Children with it are starting to live a bit longer but there is no older child with it. It is very hard that we don’t know, and they can’t give us answers. You take it day by day, otherwise we could not cope”.
He gets many therapies, most of which the couple pay for themselves, having given much of the funds to other children with SMA Type 1.
“We kept some fundraised money in reserve in case of new treatment. Having a child with a disability is expensive. Everything you buy, like a swing seat, costs hundreds,” Aisling said.
“We are waiting on an electric chair now. We have a push one, but this will bring him loads of independence. I hope when it comes that people will be seeing him buzzing around the place,” she said.
Looking back on the campaign for Dan that included an RTE Late Late Show interview, she says it is still hard to believe.
“It was surreal at the time, such a rollercoaster. 44 days was so fast and in that time there was so much going on. We are like ‘did that actually happen?’ I think that it was good for people during Covid to do the walks and fundraisers, it kept people going. People wrote to me to tell me they had anxiety and it got them out of that,” she said.
“It ended in a way we didn’t want it to. Everything was ready to go, we had the money, we were in contact with Boston. We had so many offers of accommodation, we had the flights booked. The test was such a minor little thing, we and the doctors thought it was just a tick box,” she said.
That test found the devastating fact that Dan had developed immunity from a minor virus that would stop the drug from working.
“After that we were heartbroken,” she said.
Aisling and Niall are hugely thankful for all the help they receive, both from the public, from their own families and from their employers, Portarlington Credit Union where Aisling works part-time, and Pfizer where Niall works shifts. Both employers are understanding when the couple must take time off unexpectedly for Dan.
She has a special thanks for her mother, Audrey Quigley from Timahoe.
“She really got me through the hardest part of my life. On the bad days when you get upset, she really helps get me through. We are really lucky with our families,” she said.
“I thank everyone who gave to DoItForDan, and we are so thankful that everyone hasn’t forgotten him. It genuinely means the world to us. We firmly believe that the prayers have made a difference. And I hope please God that we will be celebrating his third birthday next year”.
Asked what keeps her going, Aisling simply said it is Dan himself.
“Just to look at Dan. People say you are great to get on with it, but far from it. I still get very upset. He is turning into a little boy, you would do anything for him, he keeps us going. We are very lucky to be his parents,” she said.
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