{"id":5232,"date":"2019-06-06T10:27:46","date_gmt":"2019-06-06T14:27:46","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=5232"},"modified":"2019-09-30T12:38:09","modified_gmt":"2019-09-30T16:38:09","slug":"jjs-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/champ1-2\/jjs-story\/","title":{"rendered":"JJ’s Story"},"content":{"rendered":"

By: Jeff, Parent of JJ, a 4 year old with a CHAMP1 genetic change<\/h3>\n

What is your child\u2019s relationship like with his\/her siblings?<\/h3>\n

They are the biggest blessing in our lives<\/p>\n

What does your family do for fun?<\/h3>\n

We go to the pool<\/p>\n

Tell us about the biggest hardship your family faces.<\/h3>\n

Try to balance living a “normal” life and pushing our son to be the best he can be.<\/p>\n

What about your child puts a smile on your face?<\/h3>\n

He loves to be around his mom and dad all day<\/p>\n

What motivates you to participate in research?<\/h3>\n

Hope for treatment or cure, a better life for my son<\/p>\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

I don’t know but I hope more than just informational data, I would like to see some tests.<\/p>\n

What have you learned about your child\u2019s condition from other families?<\/h3>\n

Everything about the disease because there is little to no research<\/p>\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

Trust God and rely on his strength. THIS IS HARD<\/p>\n

What is one question you wish researchers could answer about your child\u2019s genetic change?<\/h3>\n

When will you start investigating treatment options?<\/p>\n

Is there anything else you would like to share with other families?<\/h3>\n

Feel free to contact me anytime. raisingachamp1@yahoo.com raisingachamp.com<\/p>\n","protected":false},"excerpt":{"rendered":"

By: Jeff, Parent of JJ, a 4 year old with a CHAMP1 genetic change What is your child\u2019s relationship like with his\/her siblings? They are the biggest blessing in our lives What does your family do for fun? We go to the pool Tell us about the biggest hardship your family faces. Try to balance […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":418,"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\/5232"}],"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=5232"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5232\/revisions"}],"predecessor-version":[{"id":5233,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5232\/revisions\/5233"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/418"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5232"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}