Dr. Simon Walsh:

It is a sunny summer day. Families are getting ready for a day at the beach. They pack a picnic, sandwiches, juice and treats. We look out the bedroom window at the neighbours packing their cars with parasols and buckets and spades. Happy children are strapped into the car. Zoë has not slept for 72 hours. She is crying constantly. She is six years old and non-verbal so we do not know whether it is hunger, thirst, pain or tiredness. It could be multiple other things but these are the things we address first. We flush a tube going into her stomach with water and pain medication and we try to feed her. We give her daily anti-epileptic medication and we carry her around - she weighs 18 kg - because she gets distraught if we put her down. We apologise to our eight year old daughter that we cannot do the day trip we had planned because Zoë did not sleep, and one or other of us has been up with her overnight, again. Thankfully we do not need a trip to the hospital. We have been through this before, all too frequently. I am a consultant in emergency medicine so we do not have the worries of other parents about whether this could be appendicitis or another medical emergency.

We have pleaded for overnight help from the HSE but we do not meet the requirements. We have figured out over the years that a drive might calm her. We take turns driving around County Cork to give the other parent a break from the constant background noise. Should we use this time to clean the house, because we have not had an opportunity for three days, or should we try to spend time with the other two kids? I am not working today so we have two pairs of hands. When I am working I may be gone for up to 16 hours or even overnight. Our families live in different counties. They are helpful but they have their own lives.

Zoë has a severe disability due to a condition called CDKL5 deficiency disorder. There are seven people with her condition in Ireland, all girls. She only learned to walk one year ago. She does not talk. She has epilepsy and she requires medication through a tube into her stomach twice a day. We have had to pay privately for physiotherapy, occupational therapy, speech and language therapy and carers because none of these services is available to us publicly in Cork. This is because of a non-functional system. We have had to pay for equipment too. Nothing has been funded in Cork.

We moved from Australia to Galway three and a half years ago so have had the benefit of experiencing disability services in three places. Australia was in the process of introducing the national disability insurance scheme Mr. Broadhead spoke about. Through this scheme funding is provided to families to try to reduce costs in the future by achieving a child's potential with early, personalised intervention, guided by the parents and the therapists. We are dual citizens of Ireland and Australia and could have stayed in Australia but with Zoë being unable to make 25-hour flights in the future and the thought of never seeing our elderly parents again we made the hard decision to move back to Ireland where we knew the health system was not as mature. We spoke to a paediatrician in Galway who advised us there were better services there than in other regions in Ireland and we made the decision to come back.

Galway had early intervention, including regular physiotherapy, hydrotherapy, occupational therapy, speech and language therapy and even respite. Despite all this, we still felt that family support was closer in Cork and after two years in Galway we reluctantly made the move, during the pandemic, with a third child on the way. A friend in Australia whose child has the same condition gets two hours of occupational therapy, one hour of physiotherapy, one hour of speech therapy and one hour of vision therapy per week plus every three months gets an intensive therapy period of three weeks which involves three hours per day, Monday to Friday. This child also gets a carer for nine hours per week and there is funding for equipment.

The financial burden of having a child like Zoë has a great impact on families. Fiona is not entitled to the carer's allowance because it is means tested, so despite being a full-time carer she is not entitled to an income. She is a radiographer by profession but is unable to return to the workforce. If therapy was available in schools, she would not have to spend time driving the family around to appointments.

We knew after researching that the services in Cork would not be as good as in Galway. Covid-19 has obviously had an impact but what we have found in Cork is a completely underresourced and underfunded system from the perspective of both health and special education. We regularly think of packing up and moving back to Australia. This is not acceptable. Zoë should have the same opportunities as all other Irish children to reach her potential and we should have the opportunity to live as normal a life as we can. The current system does not allow Zoë or children like her to take their place in the world by developing their skills and abilities.