{"id":11215,"date":"2021-10-01T15:00:55","date_gmt":"2021-10-01T19:00:55","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=11215"},"modified":"2021-10-01T15:00:55","modified_gmt":"2021-10-01T19:00:55","slug":"filips-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/csnk2a1\/filips-story\/","title":{"rendered":"Filip’s Story"},"content":{"rendered":"

By: Karolina, Parent of Filip, a 12 year old with a CSNK2A1 genetic change<\/h3>\n

“…you have to fight for a better tomorrow. You must never give up.”<\/em><\/p>\n

\"\"<\/p>\n

What is your family like?<\/h3>\n

My family consists of three people: me, Karolina; and my husband, Bartek; and Filip, who is sick with Okur-Chung Neurodevelopmental Syndrome. Filip is 12 years old. We live in Poland.<\/p>\n

What do you do for fun?<\/h3>\n

We like to play board games, we love to ride a bike and we like to bake various cakes together with Filip.<\/p>\n

Tell us about the biggest hardship you face.<\/h3>\n

Our biggest problem is that Filip is short. Unfortunately, children very often, but also not only, tease Philip a lot because of this. Filip does not like maths, it is a great abstract for him.<\/p>\n

What impacts your decision to participate or not to participate in research?<\/h3>\n

Unfortunately, a language barrier.<\/p>\n

What is one question you wish researchers could answer about this genetic change?<\/h3>\n

Can they be more independent as an adult? Can the syndrome cause major changes in adulthood?<\/p>\n

What have you learned about your or your child’s genetic condition from other families?<\/h3>\n

Unfortunately, I know very little about this disease because in Poland, the knowledge of doctors about this disease is very small.<\/p>\n

If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?<\/h3>\n

That you have to fight for a better tomorrow. You must never give up.<\/p>\n","protected":false},"excerpt":{"rendered":"

By: Karolina, Parent of Filip, a 12 year old with a CSNK2A1 genetic change “…you have to fight for a better tomorrow. You must never give up.” What is your family like? My family consists of three people: me, Karolina; and my husband, Bartek; and Filip, who is sick with Okur-Chung Neurodevelopmental Syndrome. Filip is […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":8842,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11215"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=11215"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11215\/revisions"}],"predecessor-version":[{"id":11218,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11215\/revisions\/11218"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/8842"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=11215"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}