“Don\u2019t let it consume you! There\u2019s still a child that needs you and needs you to be her or his advocate! Learn to be his or her voice and do what\u2019s best for them.”<\/em><\/p>\n They are very close my oldest loves her little sister so much and is very protective.<\/p>\n We love six flags and getting wet both my daughters love the pool. We love doing new things so every chance we get we go somewhere new.<\/p>\n The most is Jaylene’s inability to do things on her own and is very dependent. Also having multiple appointments and therapy sessions during the week. Jaylene sees her pediatrician often as well as her neurologist and is now about to have a GI dr as well as physical and occupational therapy along with speech therapy. My oldest daughter sometimes feels we don\u2019t give her the attention she deserves due to always having to go see drs.<\/p>\n Everything! Jaylene is such a happy baby she smiles at everything and everyone. She never cries unless she\u2019s hungry. She looks at you with such love and admiration it\u2019s impossible not to look at her and smile.<\/p>\n I want to know everything I can about her diagnosis that way I can prepare myself and give her the best chance at a happy and healthy life so anything I can read or do to help and receive help I\u2019m willing to do. Like I said before she\u2019s such a happy baby and that motivates me to help her continue to be happy.<\/p>\n I feel this is so important for our kiddos and family and support Simons Searchlight<\/span> 100% since there is not much out there about stxbp1 I\u2019m glad his company has taking it upon themselves to do research on this.<\/p>\n A lot! If it wasn\u2019t for the support group I don\u2019t know what I would do. The group has allowed to get a glimpse into what my life might be like as well as I have a support group to ask questions about concerns I have. Everyday is a different day and Jaylene shows different signs of stxbp1 and sometimes I don\u2019t know if it\u2019s normal or if I should be concerned so having a group to to help me with any questions or concerns helps a lot as well as emotional support when I\u2019m having a bad day.<\/p>\n Find support ASAP! There are a few support groups that are amazing for emotional support and are there to answer any questions. Also reading the book by Areva Martin called being the best advocate for you child with autism and other disabilities. That changed my whole outlook in life. Also it\u2019s ok to go through the grief and feel hopeless and feel like it\u2019s your fault. Cry! Cry cry all you want as hard as you want, go through the stages of grief… but Don\u2019t let it consume you! There\u2019s still a child that needs you and needs you to be her or his advocate! Learn to be his or her voice and do what\u2019s best for them.<\/p>\n is it possible to have stxbp1 and still be able to function like a regular child, toddler, young child, teen, adult!<\/p>\n Here are 2 groups in Facebook with amazing parents who are going through this as well here\u2019s their name look for them on Facebook it will help. Stxbp1 parents alliance and parents with children who have stxbp1<\/p>\n","protected":false},"excerpt":{"rendered":" By: Jeslene, Parent of Jaylene, a 6 month old with an STXBP1 genetic change “Don\u2019t let it consume you! There\u2019s still a child that needs you and needs you to be her or his advocate! Learn to be his or her voice and do what\u2019s best for them.” What is your child\u2019s relationship like with […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":584,"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\/4801"}],"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=4801"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4801\/revisions"}],"predecessor-version":[{"id":4803,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4801\/revisions\/4803"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/584"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=4801"}],"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