{"id":10897,"date":"2021-07-23T10:44:29","date_gmt":"2021-07-23T14:44:29","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=10897"},"modified":"2021-07-23T10:44:29","modified_gmt":"2021-07-23T14:44:29","slug":"prestons-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/tlk2\/prestons-story\/","title":{"rendered":"Preston’s Story"},"content":{"rendered":"

By: Scott, Parent of Preston, a 5 year old with a TLK2 genetic change<\/h3>\n

“Never stop learning…ask questions, talk to as many people as possible”<\/em><\/p>\n

\"\"<\/p>\n

What is your family like?<\/h3>\n

I have a very loving and generous family. I have a beautiful daughter (Lilly – age 13) & son (Preston – age 5). We live in the great state of New Hampshire in USA.<\/p>\n

Tell us about the biggest hardship you face.<\/h3>\n

My son Preston was diagnosed with TLK2 when he was 3 years old. This genetic disorder has severely effected his development and at this present time he is completely non-verbal. It’s been a real struggle adjusting to life with a child that has special needs – so I would characterize this as my biggest hardship I have had to face.<\/p>\n

What motivates you to participate in research? How has participating in research been helpful for you?<\/h3>\n

It’s an opportunity to learn more about my son’s genetic disorder as well as contribute to the study of this genetic disorder with hopes of one day to find a cure.<\/p>\n

How do you feel you are helping Simons Searchlight<\/span> learn more about rare genetic changes?<\/h3>\n

By allowing research to be done on my son’s current genetic disorder with hopes to one day find a cure.<\/p>\n

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

What is the life expectancy of someone with this genetic disorder?<\/p>\n

What have you learned about your or your child’s genetic condition from other families?<\/h3>\n

I have learned that there is really not many people out there with this genetic disorder (TLK2) thus causing little to be known in regards of symptoms, treatment etc. I have been able to get a feel of what our life may look like in the future in talking with families with older children; which has helped with preparation and planning.<\/p>\n

If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?<\/h3>\n

Never stop learning…ask questions, talk to as many people as possible in regards to this disorder – whether they be people currently living with this genetic disorder or medical professionals that specialize in it as well.<\/p>\n","protected":false},"excerpt":{"rendered":"

By: Scott, Parent of Preston, a 5 year old with a TLK2 genetic change “Never stop learning…ask questions, talk to as many people as possible” What is your family like? I have a very loving and generous family. I have a beautiful daughter (Lilly – age 13) & son (Preston – age 5). We live […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":6994,"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\/10897"}],"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\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=10897"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/10897\/revisions"}],"predecessor-version":[{"id":10901,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/10897\/revisions\/10901"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6994"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=10897"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}