“You are not alone.”<\/em><\/p>\n Our older daughter who is five has a mutation in ACTL6b. She has two 10 month old identical twin brothers. She mostly watches them play.<\/p>\n Mostly do activities at home.<\/p>\n Our daughter\u2019s inability to walk and freely get around. The older she gets, the harder it gets to move her around, bath her etc.<\/p>\n Her smile.<\/p>\n Hoping they may give this mutation a human disease name so it is recognized.<\/p>\n If you are interested in her medical conditions impacted by her mutation it may help others.<\/p>\n At least you now understand why your child is the way they are. Now you can look forward to helping them be all they can be.<\/p>\n What does my child\u2019s future look like?<\/p>\n You are not alone.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Holly, Parent of Mia, a 5 year old with a ACTL6B genetic change “You are not alone.” What is your child\u2019s relationship like with his\/her siblings? Our older daughter who is five has a mutation in ACTL6b. She has two 10 month old identical twin brothers. She mostly watches them play. What does your […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":396,"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\/5304"}],"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=5304"}],"version-history":[{"count":4,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5304\/revisions"}],"predecessor-version":[{"id":5388,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5304\/revisions\/5388"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/396"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5304"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}What is your child\u2019s relationship like with his\/her siblings?<\/h3>\n
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
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