{"id":3895,"date":"2025-12-08T09:45:11","date_gmt":"2025-12-08T09:45:11","guid":{"rendered":"https:\/\/egylepesseltobb.hu\/?p=3895"},"modified":"2025-12-08T09:45:11","modified_gmt":"2025-12-08T09:45:11","slug":"p-petra-tamas-es-csaladja","status":"publish","type":"post","link":"https:\/\/egylepesseltobb.hu\/en\/2025\/12\/08\/p-petra-tamas-es-csaladja\/","title":{"rendered":"P. Petra, Tam\u00e1s and family"},"content":{"rendered":"<p>The Pihokker family is raising two children with long-term illnesses and special educational needs. The family's daily life is characterised by the organisation, provision and financing of ongoing development and therapies.<\/p>\n<p>Their youngest child, Tam\u00e1s, now 2.5 years old, was born at 35 weeks with an Apgar score of 6\/8 due to a CTG anomaly. He spent the first weeks of his life in the NIC\/PIC ward. His motor development lagged behind his peers at an early age and he was diagnosed with generalised hypotonia. In November 2024, genetic testing confirmed that Thomas was affected by the infantile onset form of Charcot-Marie-Tooth (CMT 3) disease, which underlies his movement problems. He is now able to sit steadily, crawl regularly, cling to furniture, stand upright, and with the help of a rolling walker and AFO, he is becoming more adept at walking as he develops - but he cannot yet walk independently.<\/p>\n<p>Tam\u00e1s's regular developmental activities - such as weekly neuro-hydrotherapy at the G\u00e9zeng\u00faz Foundation, conductor sessions at the Cs\u00f6pike Development House and a week of intensive monthly developmental sessions at the Sher Rehabilitation Centre - are essential to improve his muscle strength, balance and coordination, and to help him learn to walk with aids. As there is currently no cure for his condition, regular mobility therapy is the only way to slow the deterioration of his physical condition and give Tam\u00e1s the chance to look forward to a more independent future with a better quality of life.<\/p>\n<p>Petra, the eldest child in the family, is 5 years old. Since September 2025, she has been attending a small group at the private kindergarten of the Csodav\u00e1r EGYMI in District 15, where she receives complex, autism-specific development. She participates in individual and group therapies, dog and music therapy sessions and TSMT gymnastics. Music has a particularly positive effect on him - his communication has improved a lot recently - and his parents provide him with weekly individual music therapy sessions outside of nursery time.<\/p>\n<p>Petra has made spectacular progress recently: she has learnt to eat independently, drink from a cup, undress independently and her house-training is progressing nicely. She now makes eye contact and her speech has improved. Her special educators have also started to teach her the basics of AAC (Alternative and Augmentative Communication) using picture exchange. This not only helps Petra's development, but also makes everyday life easier for the family: if she can express her basic needs, she will need less help with self-care.<br \/>However, the family's financial resources are stretched to the limit to finance therapies for two children with different developmental needs. The father works full time and the mother is on GYOD at home with the children. <br \/>Let's help Petra and Thomas together!<br \/>That's why they want to win the Foundation's support, so that they can continue to provide their children with the development and therapeutic opportunities that can shape not only their present, but also their future.<\/p>","protected":false},"excerpt":{"rendered":"<p>The Pihokker family is raising two children with long-term illnesses and special educational needs. The family's daily life is characterised by the organisation, provision and financing of ongoing development and therapies.<br \/>\nTheir youngest child, Tam\u00e1s, now 2.5 years old, was born at 35 weeks with an Apgar score of 6\/8 due to a CTG anomaly. He spent the first weeks of his life in the NIC\/PIC ward. His motor development lagged behind his peers at an early age and he was diagnosed with generalised hypotonia. In November 2024, genetic testing confirmed that Thomas was affected by the infantile onset form of Charcot-Marie-Tooth (CMT 3) disease, which underlies his movement problems. He is now able to sit steadily, crawl regularly, cling to furniture, stand upright, and with the help of a rolling walker and AFO, he is becoming more adept at walking as he develops - but he cannot yet walk independently.<\/p>","protected":false},"author":1,"featured_media":3899,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[40],"tags":[],"class_list":["post-3895","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-orokbefogadott-csaladok"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>P. Petra, Tam\u00e1s \u00e9s csal\u00e1dja - Egy L\u00e9p\u00e9ssel T\u00f6bb alap\u00edtv\u00e1ny<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/egylepesseltobb.hu\/en\/2025\/12\/08\/p-petra-tamas-es-csaladja\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"P. Petra, Tam\u00e1s \u00e9s csal\u00e1dja - Egy L\u00e9p\u00e9ssel T\u00f6bb alap\u00edtv\u00e1ny\" \/>\n<meta property=\"og:description\" content=\"Pihokker csal\u00e1d k\u00e9t, tart\u00f3san beteg \u00e9s saj\u00e1tos nevel\u00e9si ig\u00e9ny\u0171 kisgyermeket nevel. A csal\u00e1d \u00e9let\u00e9t nap mint nap meghat\u00e1rozza a folyamatos fejleszt\u00e9sek \u00e9s ter\u00e1pi\u00e1k szervez\u00e9se, biztos\u00edt\u00e1sa \u00e9s finansz\u00edroz\u00e1sa. Kisebbik gyermek\u00fck, a most 2,5 \u00e9ves Tam\u00e1s, a 35. h\u00e9tre sz\u00fcletett meg, 6\/8-as Apgar-\u00e9rt\u00e9kkel, CTG-anom\u00e1lia miatt. \u00c9let\u00e9nek els\u0151 heteit a NIC\/PIC oszt\u00e1lyon t\u00f6lt\u00f6tte. Mozg\u00e1sfejl\u0151d\u00e9se m\u00e1r kor\u00e1n elmaradt kort\u00e1rsait\u00f3l, \u00e9s generaliz\u00e1lt hipot\u00f3ni\u00e1t diagnosztiz\u00e1ltak n\u00e1la. 2024 november\u00e9ben a genetikai vizsg\u00e1lat igazolta, hogy Tam\u00e1s a Charcot\u2013Marie-Tooth (CMT 3) betegs\u00e9g csecsem\u0151kori indul\u00e1si form\u00e1j\u00e1ban \u00e9rintett, ami a mozg\u00e1sprobl\u00e9m\u00e1i m\u00f6g\u00f6tt \u00e1ll. Jelenleg stabilan meg tud \u00fclni, szab\u00e1lyosan m\u00e1szik, b\u00fatorok mellett kapaszkodva fel\u00e1ll, \u00e9s gurul\u00f3 j\u00e1r\u00f3keret seg\u00edts\u00e9g\u00e9vel, valamint AFO-val m\u00e1r egyre \u00fcgyesebben k\u00f6zlekedik a fejleszt\u00e9sek sor\u00e1n \u2013 de \u00f6n\u00e1ll\u00f3an m\u00e9g nem tud j\u00e1rni.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/egylepesseltobb.hu\/en\/2025\/12\/08\/p-petra-tamas-es-csaladja\/\" \/>\n<meta property=\"og:site_name\" content=\"Egy L\u00e9p\u00e9ssel T\u00f6bb alap\u00edtv\u00e1ny\" \/>\n<meta property=\"article:published_time\" content=\"2025-12-08T09:45:11+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/egylepesseltobb.hu\/wp-content\/uploads\/2025\/07\/Egylepesseltobb-csaladok-2.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2500\" \/>\n\t<meta property=\"og:image:height\" content=\"1800\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"mag\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"mag\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/egylepesseltobb.hu\\\/2025\\\/12\\\/08\\\/p-petra-tamas-es-csaladja\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/egylepesseltobb.hu\\\/2025\\\/12\\\/08\\\/p-petra-tamas-es-csaladja\\\/\"},\"author\":{\"name\":\"mag\",\"@id\":\"https:\\\/\\\/egylepesseltobb.hu\\\/#\\\/schema\\\/person\\\/44617b6e78860a248a86a71696f68313\"},\"headline\":\"P. 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Kisebbik gyermek\u00fck, a most 2,5 \u00e9ves Tam\u00e1s, a 35. h\u00e9tre sz\u00fcletett meg, 6\/8-as Apgar-\u00e9rt\u00e9kkel, CTG-anom\u00e1lia miatt. \u00c9let\u00e9nek els\u0151 heteit a NIC\/PIC oszt\u00e1lyon t\u00f6lt\u00f6tte. Mozg\u00e1sfejl\u0151d\u00e9se m\u00e1r kor\u00e1n elmaradt kort\u00e1rsait\u00f3l, \u00e9s generaliz\u00e1lt hipot\u00f3ni\u00e1t diagnosztiz\u00e1ltak n\u00e1la. 2024 november\u00e9ben a genetikai vizsg\u00e1lat igazolta, hogy Tam\u00e1s a Charcot\u2013Marie-Tooth (CMT 3) betegs\u00e9g csecsem\u0151kori indul\u00e1si form\u00e1j\u00e1ban \u00e9rintett, ami a mozg\u00e1sprobl\u00e9m\u00e1i m\u00f6g\u00f6tt \u00e1ll. Jelenleg stabilan meg tud \u00fclni, szab\u00e1lyosan m\u00e1szik, b\u00fatorok mellett kapaszkodva fel\u00e1ll, \u00e9s gurul\u00f3 j\u00e1r\u00f3keret seg\u00edts\u00e9g\u00e9vel, valamint AFO-val m\u00e1r egyre \u00fcgyesebben k\u00f6zlekedik a fejleszt\u00e9sek sor\u00e1n \u2013 de \u00f6n\u00e1ll\u00f3an m\u00e9g nem tud j\u00e1rni.","og_url":"https:\/\/egylepesseltobb.hu\/en\/2025\/12\/08\/p-petra-tamas-es-csaladja\/","og_site_name":"Egy L\u00e9p\u00e9ssel T\u00f6bb alap\u00edtv\u00e1ny","article_published_time":"2025-12-08T09:45:11+00:00","og_image":[{"width":2500,"height":1800,"url":"https:\/\/egylepesseltobb.hu\/wp-content\/uploads\/2025\/07\/Egylepesseltobb-csaladok-2.jpg","type":"image\/jpeg"}],"author":"mag","twitter_card":"summary_large_image","twitter_misc":{"Written by":"mag","Estimated reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/egylepesseltobb.hu\/2025\/12\/08\/p-petra-tamas-es-csaladja\/#article","isPartOf":{"@id":"https:\/\/egylepesseltobb.hu\/2025\/12\/08\/p-petra-tamas-es-csaladja\/"},"author":{"name":"mag","@id":"https:\/\/egylepesseltobb.hu\/#\/schema\/person\/44617b6e78860a248a86a71696f68313"},"headline":"P. 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