“The brain is a powerful thing, positive thinking and encouragement will take you and your family further in a happy life together.”<\/em><\/p>\n Travel, biking, fishing, animal parks, horseback riding. reading books.<\/p>\n Andrik is getting bigger and it is becoming more difficult to help him move from A to B. Seeing that he wants to do things alone and him not being able to, is the hardest.<\/p>\n Andrik is the most optimist child I have ever met. He is always happy and always wants to try. His smile makes me smile.<\/p>\n The more we share what we know the better off this world will be.<\/p>\n I hope that my son can add another level of information about the different spectrums of his diagnosis.<\/p>\n I have learned that his diagnosis is not regressive. That all the therapies I have him participate in are helping and that his level of cognitive progression will continue.<\/p>\n The brain is a powerful thing, positive thinking and encouragement will take you and your family further in a happy life together.<\/p>\n What is the highest level of developed gross and fine motor skills? Has a child with CTBP1 ever walked?<\/p>\n Out of the four cases in the study for CTBP1 all of the children needed tube feeding. My son doesn’t. We give him high calorie\/ protein drink supplements (3xs a day) to compensate for additional nutrition intake.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Angela, Parent of Andrik, a 5 year old with a CTBP1 genetic change “The brain is a powerful thing, positive thinking and encouragement will take you and your family further in a happy life together.” What does your family do for fun? Travel, biking, fishing, animal parks, horseback riding. reading books. Tell us about […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":439,"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\/5199"}],"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\/25"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=5199"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5199\/revisions"}],"predecessor-version":[{"id":5200,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5199\/revisions\/5200"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/439"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5199"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}What does your family do for fun?<\/h3>\n
Tell us about the biggest hardship your family faces.<\/h3>\n
What about your child puts a smile on your face?<\/h3>\n
What motivates you to participate in research?<\/h3>\n
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight<\/span> (16p11.2, 1q21.1, or single gene changes)?<\/h3>\n
What have you learned about your child\u2019s condition from other families?<\/h3>\n
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/h3>\n
What is one question you wish researchers could answer about your child\u2019s genetic change?<\/h3>\n
Is there anything else you would like to share with other families?<\/h3>\n