![\"\"](\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2019\/05\/22112649\/9-month-old-16p-Del-262x300.jpg\")
<\/h3>\n<\/h3>\n“It is not bad news. It is a journey.”<\/em><\/p>\n Our daughter is 5 years younger than her brother but she absolutely adores him! He is one person that I can always count on to make her smile. She will crawl her way around the house just to follow him.<\/p>\n Our family enjoys being outdoors, camping, walks with the family dog, and most importantly being together. We like to be busy so we do a lot of traveling within the area and across Wisconsin to see family and friends.<\/p>\n I believe the biggest hardship we have at this time is not getting enough family time together. My fiance and I work opposite shifts. He spends time with the children while I work first shift and I have them while he works second. He literally drops the kids off at my work when I get out then he’s off to his work. I don’t believe her condition has caused any hardships. We were told by a great Neurologist that her condition is not “bad news” it is a journey. Life is a journey and we always try to stay optimistic about our journey together.<\/p>\n Their smiles when they look at me. It is the absolute best heartwarming feeling. It never fails to put a smile on my face, or anyone else’s.<\/p>\n I am really excited to learn more about these conditions and what conclusions will be drawn up. I was most motivated by the thought of helping others when their journey begins down the same road.<\/p>\n I feel each of us that are voluntarily participating in this research have a common goal of wanting a better understanding of the conditions and what we can do to help others. I think each participant is valuable, unique in their own way, which gives variation yet some commonality within the study.<\/p>\n I have yet to speak with other families, but I am excited to do so!<\/p>\n The same advice I was given, “It is not bad news. It is a journey.”<\/p>\n Being that my daughter is still under one year old, I wish I knew what to expect in the future. I would like to prepare myself and guard myself and my family with the best tools to help her succeed.<\/p>\n","protected":false},"excerpt":{"rendered":" By: The parent of a 9 month old with a 16p11.2 Deletion “It is not bad news. It is a journey.” What is your child\u2019s relationship like with his\/her siblings? Our daughter is 5 years younger than her brother but she absolutely adores him! He is one person that I can always count on to […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":161,"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\/4997"}],"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=4997"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4997\/revisions"}],"predecessor-version":[{"id":4998,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4997\/revisions\/4998"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/161"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=4997"}],"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
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