The bright colours and catchy tunes of Cocomelon cartoons entertain Eva Sanju as she sits in a special-needs buggy in the front room of her family home in north Co Dublin, facing a large TV screen on the wall.
The 3D animation series is an important source of enjoyment for the girl, who has been in palliative care for 18 months due to a neurological disorder, and will turn five in November. She is nonverbal, but makes it very clear when she wants her mother to switch to the next episode of the cartoon.
Eva reserves smiles for her devoted parents, Emiliya Joseph and Sanju Jose, and also, on occasion, for favourite carers. Sanju, after working the night shift at a nearby nursing home, is about to go upstairs to sleep when The Irish Times visits their house in Lusk. His wife, who came to Ireland before him from their native India in 2017 for a nursing job, is on carer’s leave.
They are delighted that Eva, their only child, is back in preschool this September. She had attended for one year, but then missed the second year due to frequent illness and a series of distressing hospitalisations. During the worst of those times, the prospect of their daughter ever being well enough to return to Circle Time, a preschool programme run by St Michael’s House in Kilbarrack, seemed remote.
“I’m very hopeful because she’s comfortable and pain-free,” says Emiliya, who believes her daughter’s transfer to palliative care was a good decision. “She’s living her happy life at the moment.”
Yet, when Emiliya was first advised in early 2025 that the team in Temple Street hospital believed palliative care was the next stage for their daughter, she worried, “is it something bad for Eva? You feel like palliative care is when people go at end of life.”
She was concerned healthcare staff were giving up on her daughter. But once Dr Fiona McElligott, a consultant in palliative care medicine at Temple Street, had explained what it meant and how the family would be supported, Emiliya was reassured.
It’s Not What You Think is the theme of this year’s Palliative Care Week (palliativecareweek.com), which runs until September 12th. The All-Ireland Institute of Hospice and Palliative Care wants to dispel misconceptions around palliative care that stop people availing of services that could play a vital role in enhancing their wellbeing. It is not giving up hope, but rather treatment that focuses on living as well as possible with a condition.
Eva’s family sees the benefits of palliative care in the community. “Our quality of life and hers is improved,” says Emiliya. “I feel like she’s more comfortable at home.”
It was about three months after Eva’s birth in the Rotunda Hospital in Dublin on November 5th, 2021, that Emiliya began to have concerns that her daughter was not achieving milestones. She was not developing head control, nor bringing her hands to the centre of her body, the midline, as would be expected.
In hindsight, some early issues with breastfeeding, which were put down to her birth by Caesarean section, were the first signs of her condition. But after the initial challenges, Eva had adapted well to feeding.
As the family waited for referral appointments, Emiliya went ahead with a planned trip to her native Kerala in southwest India with Eva, before the end of maternity leave. Within a month there, they were able to see a paediatrician and then a paediatric neurologist who organised diagnostic tests. An EEG, measuring electrical activity in the brain, came back clear but an MRI scan showed abnormalities.
Returning to Ireland with that information, Eva was given an appointment at Temple Street within a week. She was about eight months old when diagnosed with a very rare brain disorder, known as AKT3 megalencephaly-polymicrogyria-polydactyly-hydrocephalus syndrome. Subsequent genetic testing in Crumlin children’s hospital showed it was caused by a spontaneous mutation, known as a de novo change in DNA – that is, not inherited.
As Eva’s digestive system is affected, there have been many knock-on problems. She was particularly ill after needing to have a feeding tube inserted into her bowel in 2024, which is when Alison Cashell, clinical nurse co-ordinator for children with life-limiting conditions (covering Dublin North), first met the family in Temple Street.
A six-week spell as an in-patient started off a pattern for Eva where she was in and out of hospital, recalls Cashell. It was then they started the shift to palliative care and getting extra supports for the family.
But things kept going wrong for Eva.
“She just wasn’t able to get better at home by herself, so she was coming into hospital each time,” says Cashell, who is one of a team of five clinical nurse co-ordinators with Children’s Health Ireland supporting 98 children with life-limiting conditions across Dublin, Kildare and Wicklow.
“When she was unwell, we never didn’t treat anything that she was unwell with. Even though palliative care were involved, we were still talking about going to ICU if she was unwell.”
But by the end of last year, the Temple Street team were extremely concerned about Eva. “We were very worried that she might not survive,” says Cashell. “She was really poorly. She was so sick.”
The family was referred to St Francis Hospice, and staff came out and met them at home as soon as she was discharged from hospital.
Eva was up and down. “She was having lots of symptoms that would make me think that she was approaching the end of her life.”
For the next six months the St Francis team, community staff from the dedicated children’s hospice, LauraLynn, and Jack and Jill nurses were heavily involved in her care. “She kept everybody really busy,” says Cashell with a smile.
But at the beginning of the summer, the St Francis Hospice team were able to say they felt they could take a step back for now.
Eva gets most of her palliative care from three providers. The ideal, says Cashell, is that it would all come from one. However, “they all work really cohesively together,” she says. It is her job “to make sure the people who need to know the information, have the information”.
Each provider has something different to offer. For instance, Eva particularly likes the weekly music therapy she receives from LauraLynn.
Emiliya is reassured that, in moments of doubt, there is always somebody she can ring, day or night, for advice. She knows, ultimately, every decision about Eva’s care is hers but “there is somebody there to support you”.
Meanwhile, “we enjoy every day with her”, she adds, caressing her daughter, who is sitting in her lap and ready for a nap. “Some days are good when she is in form. Other days are more difficult.”