“Don’t be discouraged, encourage and provide all the support possible to ensure your child can be the best he\/she can possibly be!”<\/em><\/p>\n Go to the cottage, boating, park, zoo, fish store, swim<\/p>\n Language delays<\/p>\n He is determined. He is a happy, funny and a fun loving boy.<\/p>\n Want to learn and understand more about MED13L – long term and shirt term, how every child has a varying degree of the disorder and overall long term outlook<\/p>\n Providing more input to the research of children with MED13L as our son has been diagnosed with it.<\/p>\n Similar behavior issues, speech impairments, feeding issues<\/p>\n Don’t be discouraged, encourage and provide all the support possible to ensure your child can be the best he\/she can possibly be!<\/p>\n Will he ever be able to speak\/have full speech? Can science correct the deletion?<\/p>\n","protected":false},"excerpt":{"rendered":" By: the parent of Emery, a 3 year old with a MED13L genetic change “Don’t be discouraged, encourage and provide all the support possible to ensure your child can be the best he\/she can possibly be!” What does your family do for fun? Go to the cottage, boating, park, zoo, fish store, swim Tell us […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":532,"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\/5166"}],"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=5166"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5166\/revisions"}],"predecessor-version":[{"id":5167,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5166\/revisions\/5167"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/532"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5166"}],"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