{"id":10620,"date":"2024-05-04T03:00:14","date_gmt":"2024-05-04T00:00:14","guid":{"rendered":"https:\/\/ch.jfdi.cc\/?p=10620"},"modified":"2024-05-04T03:00:14","modified_gmt":"2024-05-04T00:00:14","slug":"parents-fight-for-sma-baby-denied-newborn-screening-and-home-care","status":"publish","type":"post","link":"https:\/\/ch.jfdi.cc\/?p=10620","title":{"rendered":"Parents fight for SMA baby denied newborn screening and home care"},"content":{"rendered":"

Pantelis Costa and his wife\u2019s world turned upside down when their son, Konstantinos Efraim, was diagnosed with Spinal Muscular Atrophy (SMA) at just two months old.
\nTheir ordeal, as reported by philenews, highlights the gaps in Cyprus\u2019s healthcare system for critically ill children.
\nMissed opportunity for early treatment<\/strong>
\nCosta blames the lack of newborn screening for SMA in Cyprus for his son\u2019s irreversible condition. \u201cIf this test had been available,\u201d he says, \u201cKonstantinos could have received treatment within the first 20 days and be walking today.\u201d He points out the case of another child, Antonis, diagnosed with SMA five years ago, proving the authorities were aware of the disease and the crucial window for early intervention.
\nBureaucratic hurdles hinder care<\/strong>
\nKonstantinos eventually received treatment, but Costa describes a constant struggle with the healthcare system. He criticises the lack of essential equipment, like a cough machine, and the bureaucratic delays in getting a qualified doctor to operate it, putting his son at risk.
\nThe Costas have been pleading for home care and nursing support for four months, facing alleged mockery from officials. \u201cIt has been tragic,\u201d Costa says. \u201cIf it weren\u2019t for me, the baby would have died\u201d due to a drop in oxygen levels. He offered to become a certified nurse himself to ensure his son\u2019s safety but received no support.
\nFinancial assistance arrived late, leaving the family reliant on friends and relatives for thousands of euros. Necessary equipment like portable oxygen had to be purchased out of pocket. Constant trips to specialists add to the financial hardship, with a meagre \u20ac150 monthly allowance falling far short of the actual \u20ac700 expense.
\nKonstantinos has been hospitalised ten times, with some instances potentially avoidable with proper care. The constant fear and stress have taken a toll on the parent\u2019s mental health.
\nCosta condemns the lack of response and empathy from the Ministry of Health and Nursing Services.
\nHe plans legal action against the state for the absence of newborn screening and home care.Healthcare system. healthcare system, Spinal Muscular Atrophy, bureaucratic hurdles<\/p>\n","protected":false},"excerpt":{"rendered":"

The lack of newborn screening for Spinal Muscular Atrophy in Cyprus has resulted in Konstantinos Efraim’s irreversible condition, according to his father Pantelis Costa. Despite eventually receiving treatment, bureaucratic hurdles and delays in care have put Konstantinos at risk, with the family facing financial hardship and relying on friends and relatives for support. The Costas have been pleading for home care and nursing assistance, but have faced alleged mockery from officials. Costa plans to take legal action against the state for the absence of newborn screening and inadequate home care services.<\/p>\n","protected":false},"author":5,"featured_media":10621,"comment_status":"open","ping_status":"closed","sticky":false,"template":"Default","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[7834,5286,8575,3346,8837,5292,3,2852,594,8540,2459,8017,988,7716,210,793,8835,4691,2120,148,3356,6537,6121,8257,4054,1222,1806,8836,7967,1358,114,4861,7871,18],"class_list":["post-10620","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-other","tag-absence","tag-assistance","tag-authorities","tag-baby","tag-bureaucratic-hurdles","tag-children","tag-cyprus","tag-delays","tag-doctor","tag-empathy","tag-family","tag-father","tag-fight","tag-friends","tag-health","tag-healthcare","tag-healthcare-system","tag-intervention","tag-legal-action","tag-local","tag-mental-health","tag-ministry-of-health","tag-opportunity","tag-response","tag-risk","tag-safety","tag-services","tag-spinal-muscular-atrophy","tag-state","tag-support","tag-top-news","tag-treatment","tag-wife","tag-world"],"acf":{"keyphrase":"","keywords":"","sourceimg":"","country-category":""},"yoast_head":"\nParents fight for SMA baby denied newborn screening and home care<\/title>\n<meta name=\"description\" content=\"The lack of newborn screening for Spinal Muscular Atrophy in Cyprus has resulted in Konstantinos Efraim's irreversible condition, according to his father Pantelis Costa. Despite eventually receiving treatment, bureaucratic hurdles and delays in care have put Konstantinos at risk, with the family facing financial hardship and relying on friends and relatives for support. The Costas have been pleading for home care and nursing assistance, but have faced alleged mockery from officials. Costa plans to take legal action against the state for the absence of newborn screening and inadequate home care services.\" \/>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Parents fight for SMA baby denied newborn screening and home care\" \/>\n<meta property=\"og:description\" content=\"The lack of newborn screening for Spinal Muscular Atrophy in Cyprus has resulted in Konstantinos Efraim's irreversible condition, according to his father Pantelis Costa. Despite eventually receiving treatment, bureaucratic hurdles and delays in care have put Konstantinos at risk, with the family facing financial hardship and relying on friends and relatives for support. The Costas have been pleading for home care and nursing assistance, but have faced alleged mockery from officials. 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