22-04-2025
Kerry parents face ‘roadblocks' and ‘untold stress' in efforts to provide care for their children with rare diseases
Moms Michelle Duggan and Anna Walsh, both hailing from the Tralee area, each have a child who suffers from a rare health condition.
The mothers provided The Kerryman with their first-hand perspectives on finding suitable caring for their children, some of the challenges they face and the importance of specialist groups like Rare Ireland, which supports the needs of families affected by rare conditions.
Michelle Duggan and her husband Joe, from Dromtacker, are parents to the bright and determined three-year-old Jack, who has SWAN.
SWAN stands for Syndromes Without A Name, as efforts to identify a disorder, or disorders, affecting Jack have failed despite the fact that he suffers from serious issues which affect his kidneys, brain, heart, lungs and other parts of the body.
Michelle said she and Joe found it very difficult to find a preschool place for Jack for the next academic year.
'The minute they heard complex needs child, people at a lot of places turned us down, which I found was very tough,' she explained.
Fortunately, after some time the parents were eventually able to find a preschool willing to take Jack and learn about his needs.
After this testing experience, Michelle has called on preschools to not turn down children with complex needs without taking the time to learn more about them.
'Jack is easy to care for. I know he has a lot going on but he's actually very easy to care for. Just think about it before you turn down complex needs children.'
Jack requires 24-hour care and Michelle has given up work so she can look after him. This means the Duggan family must rely on one income and it has been difficult for Michelle to secure carer's allowance due to issues like the amount of paperwork required and time demands.
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"There is a lot of issues that we've come across - roadblocks - while we're trying to apply,' Michelle said.
'I only get one day a week where I'd get to go into town, visit the bank and do the shopping.'
The Duggans are grateful that the Laura Lynn and Jack and Jill foundations provide nurses to care for Jack for a few hours every week, and that there are also nurses on hand to look after their son five nights a week.
However, Michelle and Joe must still stay up two nights a week to care for Jack. One of those nights is usually a Sunday, and this shift can be difficult for the parents as Joe must work the following day.
Though Irish healthcare system may be facing challenges, Michelle said she could not fault the HSE and its doctors' support for their son and credits Bumbleance children's ambulance service with providing convenient transport for the family to travel to Jack's regular appointments.
Anna Walsh and Brian Morrissey, based in Kilfenora near Fenit, are parents to daughters Connie and Róisín, a happy and sociable five-year-old with a rare condition which also requires her to attend frequent medical consultations.
Róisín was three-months-old when she was diagnosed with Angelman Syndrome, which mainly affects the nervous system and has seen her intellectual, physical and motor skills significantly delayed. She does not speak, has just started to walk and is at risk of having seizures.
Over the last five years, Róisín's mom Anna has gotten a good understanding of how the Irish healthcare system caters for children with rare illnesses.
Anna said clinicians and therapists with the necessary skills are in the country and do their best for her daughter. But the system is also under pressure and potentially overloaded, in her view.
She has also found that she and Brian must advocate on behalf of Róisín, and often have to be 'the experts in the room'.
'Angelman Syndrome, it is a rare disease, so when you come to the emergency departments or come to a new clinician or therapist, often potentially they haven't heard of it,' Anna said.
Anna and Brian both work full-time to keep their family afloat while also caring for Róisín. Anna noted that there is only one type of leave, which is limited and unpaid, for caregivers in the workforce like herself attending medical appointments.
'I think that's an important area to highlight, you know if I'm taking a day off to attend an appointment with Róisín, I come out with less money that month,' Anna said.
'Families are under massive stress, studies done show that the cost burden to families is not insignificant.'
When it came to finding a preschool arrangement for Róisín, Anna said she and Brian faced the same challenges that most parents do.
Thankfully, they were able to secure a spot for their daughter at a nursery which goes 'above and beyond' to help their daughter's development.
The parents count themselves lucky that they were also able to find a childminder to look after Róisín when she finishes preschool at midday.
Anna said it was very difficult to find a minder for Róisín outside of the preschool hours covered by The Early Childhood Care and Education Scheme (ECCE), which provides free care and education for preschool children for a set number of hours over a set period of weeks during the year.
'After the ECCE hours it's been extremely difficult to find a childminder for Róisín after midday,' Anna explained.
'We have been very lucky to find a childminder. But there have been times of untold stress where the school year is starting again, I'm starting back to work, and we had no idea of what that is going to look like and just by word of mouth we found someone who would look after her.'
Finding a primary school place for Róisín for the next academic year was another big concern for the parents.
Anna and Brian had been preparing themselves for a big struggle when they began the process last September and they were 'over the moon' when their daughter received a spot at Nano Nagle Listowel.
Anna, like Michelle Duggan, encouraged parents who also have children with complex or rare illnesses to be careful where they get medical information from, as there can be a lot of unreliable information online.
Instead, parents can seek out support and community from groups like Rare Ireland.
Anna said groups like Rare Ireland and Angelman Syndrome Ireland, with which she volunteers, largely rely on peer-to-peer funding to continue the support they provide.
The mom called for charities like the Jack and Jill Foundation and Little Blue Heroes to be kept funded as their work fills the gaps in the healthcare system and is crucial to families like hers.
