“Be strong, keep fighting for it, look for the best doctors and therapists as they will bring a lot of evolution.”<\/em><\/p>\n She still has no siblings.<\/p>\n We go in the park, shopping and visit the family.<\/p>\n She has some signs of autism, communicating with her is very simple.<\/p>\n When she understands what we say and when she smiles at us.<\/p>\n Helping others who have the same genetic mutation and providing information to researchers of this gene.<\/p>\n I believe that the exchange of information between patients and researchers can help in clarifying many symptoms and consequently better the quality of life of patients.<\/p>\n I’m still learning.<\/p>\n Be strong, keep fighting for it, look for the best doctors and therapists as they will bring a lot of evolution.<\/p>\n Will there be a cure? Is there anything that can be done to minimize the effects that the defective gene causes?<\/p>\n May our families be the true healers of this angels that God has placed in our lives.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Leandro, Parent of Helena, a 3 year old with an SCN2A genetic change “Be strong, keep fighting for it, look for the best doctors and therapists as they will bring a lot of evolution.” What is your child\u2019s relationship like with his\/her siblings? She still has no siblings. What does your family do for […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":0,"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\/4814"}],"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=4814"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4814\/revisions"}],"predecessor-version":[{"id":4816,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4814\/revisions\/4816"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=4814"}],"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
Is there anything else you would like to share with other families?<\/h3>\n