The Ayer family were supported by Cliona’s last year and they sent us the most honest and very moving thank you at the time
“We greatly appreciate your financial support Money that we received helped us in so many different ways in such a difficult time for our family of 4
Since Zack’s diagnosis I can’t work anymore. Our bills increased and we used to have 2 full time jobs and incomes to cover mortgage, bills etc. Now we have 2 kids & extra expenses due to his illness After Zack’s diagnosis we have been paralyzed with fear. It took us months to stand up on our feet
Zack’s illness is so rare that it made us feel very isolated and lonely – our families live abroad
We are full of fear and worry about the future but at the same time people like you have a huge positive impact on our situation
Zach is in good form and absolutely adores his older sister.His smile makes our hearts melt”
Zachs mum Jadwiga then went on to share with us the impact Zack’s condition, the journey there are on with him and the financial impact of caring for him
When Jadwiga Ayer’s daughter, Rose, gets home from crèche, she’s not allowed to touch her little brother until she has washed her hands. If she has a cough, she must isolate from him – and so must any family member who becomes unwell.
Zach has MMA, a very rare life-threatening metabolic disorder. “Not all disabilities are visible. Zach looks great but his body’s very sick,” says Newbridge-based Jadwiga.
Any type of stress – for example, viral illness – to the 15-month-old’s system can cause life-threatening metabolic de-compensation, a kind of metabolic crisis. “It can cause organ, brain and optic nerve damage. Children can go into coma or die.”
When Zach was born everything seemed fine. After vaccinations at two months, Jadwiga and husband Karl noticed he was lethargic, vomiting, losing weight. Within days the GP referred him to Portlaoise Hospital. Temple Street Hospital was soon involved.
“This condition’s hard to diagnose but one doctor felt it was metabolic,” says Jadwiga, who’s grateful it took just a day to get the MMA diagnosis. “He has the trickier Type B MMA, which doesn’t respond to vitamin B12 injections.”
In those first days, Zach needed urgent intervention. His survival wasn’t certain. Trained to do injections, put in a feeding tube, his parents brought him home from Temple Street, knowing they’d have to do what the nurses had been doing. “For a whole year, we were every day sterilising, preparing feeding tube, feeding him. The medication regimen was so strict. There was the pressure of observing him. There was no time to sleep, eat or process.”
Slowly, over months, they weaned Zach off the feeding tube. He’s eating solids now and has started sitting and crawling. Five-year-old Rose loves making him laugh. But Jadwiga and Karl have been told Zach could run into liver and kidney issues in the next few years. “It’s a very complicated illness. We’re still learning. Any childhood illness could induce metabolic crisis – we live with that uncertainty.During this first traumatic year of Zach’s life” Jadwiga says “Cliona’s Foundation has been a godsend.”
Jadwiga describes the costs of driving to hospital every day, the toll and parking costs, as placing an impossible burden on them. “Transportation was a huge hit for us. Feeling so lost, so unsure, Cliona’s Foundation was a massive help. And when we’d get a call from the charity – especially with isolation of Covid – we felt we weren’t alone.”