{"id":72340,"date":"2015-08-27T12:40:25","date_gmt":"2015-08-27T16:40:25","guid":{"rendered":"\/news\/?p=72340"},"modified":"2015-08-30T12:36:58","modified_gmt":"2015-08-30T16:36:58","slug":"baby-boy-with-rare-condition-defies-odds-celebrates-first-birthday","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/baby-boy-with-rare-condition-defies-odds-celebrates-first-birthday\/","title":{"rendered":"Baby boy with rare condition defies odds, celebrates first birthday"},"content":{"rendered":"
<\/div>

Jaxon Buell<\/a> was diagnosed prenatally with a condition so rare that the doctors couldn\u2019t give it a name. \u00a0All they could tell his parents, Brandon and Brittany, was that their son likely wouldn\u2019t survive in the womb, and if he did, he would die shortly after birth. The couple was\u00a0advised to terminate.<\/p>\n

Shocked that the doctors would suggest abortion when they didn\u2019t even have an actual\u00a0diagnosis for their son, they decided that however long their son had to live would be up to God, and they chose life.\u00a0Jaxon was born on August 27, 2014 and received an official diagnosis of Lissencephaly, in which the brain doesn\u2019t have the folds that it should.\u00a0Despite the doctors\u2019 grim prognosis, Jaxon is celebrating his first birthday.<\/p>\n

Over his first year of life, Jaxon amazed the doctors with how well he has been, but the last couple of months have been rough. He\u2019s been uncomfortable and fussy, and his parents are working overtime to help him.\u00a0He is undergoing testing to determine what the cause of his recent discomfort is.<\/p>\n

\u201cThe frustration continues because obviously something is going on, but how do we find it, and how do we fix it?\u201d they wrote on their Facebook<\/a> page. \u201cOne day at a time still for our family. Our baby boy remains strong as ever to be dealing with all of this every day yet still loves to cuddle with Mommy and Daddy as much as possible.\u201d<\/p>\n

Told by their local hospital that they were simply out of options to help Jaxon, the family flew to Boston and is there now, meeting with the top infant neurological team in the United States. They are hoping to find answers and help for their son.<\/p>\n

Neurologists in Boston confirmed that Jaxon has a profound case of Lissencephaly. Jaxon will be meeting with two more neurologists this week who deal with epilepsy and neurological disorders, and\u00a0will also meet with a\u00a0gastroenterologist to determine the best method of feeding Jaxon, who currently requires a feeding tube. His parents remain hopeful.<\/p>\n

The Buells are asking for prayers that they find the right doctor in Boston who can put their son on the path to better health.<\/p>\n

Their goal, they wrote on Facebook, is:<\/p>\n

\n

… to find that one person, who actually knows how to help, to hear about or see Jaxon, and can add to his life or his quality of life with some type of answer, option, or solution. And, maybe, through our experiences, the next family that may have to walk in our footsteps, will be better off and have more help of where to turn, what to do, and where to go, because of Jaxon’s story. There is hope, a plan, and a purpose here, and Boston is just the latest chapter.<\/p>\n<\/blockquote>\n","protected":false},"excerpt":{"rendered":"

Jaxon Buell was diagnosed prenatally with a condition so rare that the doctors couldn\u2019t give it a name. \u00a0All they could tell his parents, Brandon and Brittany, was that their son likely wouldn\u2019t survive in the womb, and if he did, he would die shortly after birth. The couple was\u00a0advised to terminate. Shocked that the […]<\/p>\n","protected":false},"author":62,"featured_media":72341,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[4],"tags":[4928,4927,4929],"yoast_head":"\nBaby boy with rare condition defies odds, celebrates first birthday<\/title>\n<meta name=\"description\" content=\"Brandon & Brittany Buell were told that their son likely wouldn\u2019t survive in the womb, and if he did, he would die shortly after birth. 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