Eva\u2019s family sees the benefits of palliative care in the community. \u201cOur quality of life and hers is improved,\u201d says Emiliya. \u201cI feel like she\u2019s more comfortable at home.\u201d<\/p>\n
It was about three months after Eva\u2019s 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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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\u2019s hospital showed it was caused by a spontaneous mutation, known as a de novo change in DNA \u2013 that is, not inherited.<\/p>\n
As Eva\u2019s 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.<\/p>\n
![\"Dublin](\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/09\/ZS2OWW6QEBGQTKCZFJVWDVCORA.jpg\")
Dublin North clinical nurse co-ordinator for children Alison Cashell with Emiliya Joseph and her daughter, Eva. Photograph: Enda O’Dowd <\/p>\n
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.<\/p>\n
But things kept going wrong for Eva.<\/p>\n
\u201cShe just wasn\u2019t able to get better at home by herself, so she was coming into hospital each time,\u201d says Cashell, who is one of a team of five clinical nurse co-ordinators with Children\u2019s Health Ireland supporting 98 children with life-limiting conditions across Dublin, Kildare and Wicklow.<\/p>\n
\u201cWhen she was unwell, we never didn\u2019t 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.\u201d<\/p>\n
But by the end of last year, the Temple Street team were extremely concerned about Eva. \u201cWe were very worried that she might not survive,\u201d says Cashell. \u201cShe was really poorly. She was so sick.\u201d<\/p>\n
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.<\/p>\n
Eva was up and down. \u201cShe was having lots of symptoms that would make me think that she was approaching the end of her life.\u201d<\/p>\n
For the next six months the St Francis team, community staff from the dedicated children\u2019s hospice, LauraLynn, and Jack and Jill nurses were heavily involved in her care. \u201cShe kept everybody really busy,\u201d says Cashell with a smile.<\/p>\n
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.<\/p>\n
Eva gets most of her palliative care from three providers. The ideal, says Cashell, is that it would all come from one. However, \u201cthey all work really cohesively together,\u201d she says. It is her job \u201cto make sure the people who need to know the information, have the information\u201d.<\/p>\n
Each provider has something different to offer. For instance, Eva particularly likes the weekly music therapy she receives from LauraLynn.<\/p>\n
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\u2019s care is hers but \u201cthere is somebody there to support you\u201d.<\/p>\n
Meanwhile, \u201cwe enjoy every day with her\u201d, she adds, caressing her daughter, who is sitting in her lap and ready for a nap. \u201cSome days are good when she is in form. Other days are more difficult.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"The bright colours and catchy tunes of Cocomelon cartoons entertain Eva Sanju as she sits in a special-needs…\n","protected":false},"author":2,"featured_media":618038,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[76750,103,12875,397,396,61,2568,60,127509],"class_list":["post-618037","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-children-s-health","tag-health","tag-health-wellness","tag-health-care","tag-healthcare","tag-ie","tag-india","tag-ireland","tag-temple-street-hospital"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/618037","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=618037"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/618037\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/618038"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=618037"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=618037"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=618037"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}