![\"\"](\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2019\/06\/05064605\/Finley.jpg-300x200.jpg\")
<\/h3>\n<\/h3>\n“Take a deep breath and allow yourself to feel all the emotions. Then start searching for other families. Those are the people that will help you through this unexpected journey we are all on.”<\/em><\/p>\n Finley adores her siblings and they adore her! She gives them hugs and kisses and says their names.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n We love spending time together at home. Snuggling, building with blocks, coloring, watching movies and tickling are some of our favorite things to do!<\/p>\n Thinking about when I am no longer here for Finley is one of my biggest fears.<\/p>\n Finley has the best belly laugh ever! It is infectious and one of a kind!<\/p>\n Learning more about PACS1 and being able to reach more families who are impacted by it.<\/p>\n I feel that by being open about Finley and her life challenges will have a very positive and important impact.<\/p>\n I have learned that although our kids have the same diagnosis and the same facial features, they are all so incredibly different. Once there are more people diagnosed I think it will be easier to find people who have children more similar to Finley.<\/p>\n Take a deep breath and allow yourself to feel all the emotions. Then start searching for other families. Those are the people that will help you through this unexpected journey we are all on.<\/p>\n Why are all the children all so different?<\/p>\n Find the poem “Welcome to Holland.”<\/p>\n","protected":false},"excerpt":{"rendered":" By: the parent of Finley, a 3 year old with a PACS1 genetic change “Take a deep breath and allow yourself to feel all the emotions. Then start searching for other families. Those are the people that will help you through this unexpected journey we are all on.” What is your child\u2019s relationship like with […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":534,"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\/5180"}],"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=5180"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5180\/revisions"}],"predecessor-version":[{"id":5182,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5180\/revisions\/5182"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/534"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5180"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}What is your child\u2019s relationship like with his\/her siblings?<\/h3>\n
\n\n\n\nWhat 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