{"id":26,"date":"2023-09-26T21:59:11","date_gmt":"2023-09-26T20:59:11","guid":{"rendered":"https:\/\/irisfamilysupport.org\/?page_id=26"},"modified":"2026-04-16T09:40:44","modified_gmt":"2026-04-16T08:40:44","slug":"our-story","status":"publish","type":"page","link":"https:\/\/irisfamilysupport.org\/index.php\/our-story\/","title":{"rendered":"Our Story"},"content":{"rendered":"\t\t
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Our Story<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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25 years. Two children. One unchanged system.<\/span><\/b> \u00a0<\/span><\/p>

Emmy\u00a0was born in June 1991. She died aged 21 in November 2012.<\/span>\u00a0<\/span><\/p>

She was epileptic before birth, though this\u00a0wasn\u2019t\u00a0known at the time. Her first seizure came at three months old and led to a\u00a014 month\u00a0hospital stay. In April 1992, Great Ormond Street Hospital told her family that she was unlikely to survive her first year and that if she did, she would\u00a0in all likelihood\u00a0be\u00a0<\/span>\u201ca vegetable for the rest of her life.\u201d<\/i>\u00a0<\/span><\/p>

She survived.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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What followed was not a story of care, but of conflict. After her eventual discharge, the only\u00a0option\u00a0offered was residential care. Her family spent years fighting social services simply to allow her to live at home, with her family, on her own terms. By the time Emmy reached her late teens, her life and her family\u2019s ability to survive had become dominated by legal battles to secure\u00a0adequate\u00a0support.<\/span>\u00a0<\/span><\/p>

Twenty five\u00a0years later,\u00a0<\/span>Thea\u00a0was born.<\/span>\u00a0<\/span><\/p>

She was diagnosed with a rare neurodegenerative condition just under a year later. Unlike Emmy, she received a diagnosis because genetic testing had\u00a0advanced\u00a0and her condition had already been\u00a0identified. But in practice, that diagnosis became the end rather than the beginning of support. There\u00a0was\u00a0no treatment and no meaningful plan. A physiotherapist visited. An OT provided some play equipment. Then the professionals disappeared.<\/span>\u00a0<\/span><\/p>

Unlike Emmy, Thea never met a social worker.<\/span>\u00a0<\/span><\/p>

Institutionalisation\u00a0was no longer\u00a0an option\u00a0and that is progress. But meaningful, sustained support was also absent. Her family navigated life with a child who could not walk, talk, eat independently, or survive without constant care, seizures, medical equipment, and round the clock supervision.\u00a0Sink or swim.<\/span>\u00a0<\/span><\/p>

When we met, after both Emmy and Thea had died, the parallels were impossible to ignore. Different decades. Different\u00a0language. Same outcome.<\/span>\u00a0<\/span><\/p>

What have we learned in\u00a0twenty five\u00a0years?<\/span>\u00a0<\/span><\/p>

Disabled children now have the right to live with their families.<\/span>\u00a0<\/span><\/p>

But families are still expected to shoulder the risk, the\u00a0labour, and\u00a0the trauma\u00a0alone.<\/span>\u00a0<\/span><\/p>

Despite medical advances and policy reform, support for families of children with complex medical and developmental disabilities\u00a0remains\u00a0fragmented, reactive, and often adversarial. Parents\u00a0are still required to\u00a0be full time carers and expert system navigators, while their lived\u00a0expertise\u00a0and humanity are routinely undervalued.<\/span>\u00a0<\/span><\/p>

Iris Possibilities\u00a0exists\u00a0to change this.<\/span><\/p>

We use lived experience not as anecdote, but as infrastructure to redesign how support\u00a0actually works\u00a0for families with complex needs.<\/span>\u00a0<\/span><\/p>

This is not radical.<\/span>\u00a0<\/span><\/p>

It is not extravagant.<\/span>\u00a0<\/span><\/p>

It is basic,\u00a0humane\u00a0support\u00a0and it is long overdue.<\/span>\u00a0<\/span><\/p>

The real question is not whether we can afford to do better.<\/span>\u00a0<\/span><\/p>

It is why, after decades of evidence, we still do not.<\/span>\u00a0<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tFind Out More<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

Our Story 25 years. Two children. One unchanged system. \u00a0 Emmy\u00a0was born in June 1991. She died aged 21 in November 2012.\u00a0 She was epileptic before birth, though this\u00a0wasn\u2019t\u00a0known at the time. Her first seizure came at three months old and led to a\u00a014 month\u00a0hospital stay. In April 1992, Great Ormond Street Hospital told her […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-26","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/pages\/26","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/comments?post=26"}],"version-history":[{"count":119,"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/pages\/26\/revisions"}],"predecessor-version":[{"id":1338,"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/pages\/26\/revisions\/1338"}],"wp:attachment":[{"href":"https:\/\/irisfamilysupport.org\/index.php\/wp-json\/wp\/v2\/media?parent=26"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}