{"id":76398,"date":"2015-10-07T19:21:14","date_gmt":"2015-10-07T23:21:14","guid":{"rendered":"\/news\/?p=76398"},"modified":"2015-10-07T19:28:58","modified_gmt":"2015-10-07T23:28:58","slug":"baby-elliot-with-rare-medical-condition-shares-the-preciousness-of-life","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/baby-elliot-with-rare-medical-condition-shares-the-preciousness-of-life\/","title":{"rendered":"Baby Elliot, born with rare medical condition, shares the preciousness of life"},"content":{"rendered":"
<\/div>

When Brandon and Samantha Castro learned they were expecting their first child, they were just settling into life back in Franklin, Tennessee, with Samantha Castro\u2019s mother, Brandy Blanton. They were saving up for a home of their own and Samantha Castro was working at a nearby high school as a counselor. Her sister, Caitlin Rainey, had also recently moved back home. The household also included their two younger siblings, still in high school.\u00a0 But it turned out, the couple would need\u00a0the support of the family.<\/p>\n

As the pregnancy progressed, the Castros learned that their baby had what’s known as\u00a0short long bones, and that she may or may not have a heart defect. Tests ruled out Down syndrome, but doctors couldn\u2019t pinpoint what was causing the baby girl\u2019s problems.<\/p>\n

\u201cWe were hopeful that they were all wrong, and at the same time (we had) no clue,\u201d Samantha Castro told USA Today<\/a>.<\/p>\n

\"12045626_1153843134645199_1615175320250035224_o\"<\/p>\n

\"12019951_1148597065169806_3363484184741230666_n\"<\/p>\n

The couple named their baby Elliot Grace, and during her delivery she gave them a scare when nurses couldn\u2019t find a heartbeat. However, she pulled through, and was taken immediately\u00a0to the neonatal intensive care unit. During a week of confusion and testing, the couple was given the news that baby Elliot has rhizomelic chondrodysplasia punctate, or RCDP, a terminal form of dwarfism.<\/p>\n

\"12046633_1151131111583068_5749283297344496560_n\"<\/p>\n

\u201cIt was like the most devastating week ever,\u201d said Samantha Castro. \u201cWe were just waiting for more to happen.\u201d<\/p>\n

Most children with RCDP don\u2019t live beyond age 10, while some with more mild symptoms\u00a0have lived into adulthood. Those symptoms can include cataracts, seizures, developmental disabilities, lung problems, and heart problems. Doctors said little Elliot would need heart surgery in order to survive, but they gave her parents the option to refuse and take her home to die.<\/p>\n

\u201cWe were very much on the same page,\u201d said Samantha Castro. \u201cWe\u2019re not ready to give up on her.\u201d<\/p>\n

\"DefundAd-400b\"<\/a><\/p>\n

But then, a miracle happened. Doctors took Elliott off of her medications in preparation for the surgery. Doctors thought these medications were keeping her alive, but it turned out she didn\u2019t need them, and she didn\u2019t need the surgery, either.<\/p>\n

Now, she\u2019s four months old and adored by her large extended family. Rainey, who works at night, takes care of her during the day while Elliott\u2019s parents work. Rainey also attended a\u00a0conference in Alabama for families of children with RCDP, where they celebrated the news of a clinical trial<\/a> that may help extend the lives of these children.<\/p>\n

\u201cThe conference was awesome,\u201d Rainey said. \u201cYou read about this disease, about how they don\u2019t make it out of the hospital\u2014then you see a kid who\u2019s 13 years old.\u201d<\/p>\n

Friends and Facebook fans<\/a> also support Elliott and her parents, by purchasing light pink wristbands that say \u201cPray for Elliott Grace,\u201d and they celebrate along with the family Elliott\u2019s accomplishments, including each and every ounce she works to gain. At four months, she weighs just seven pounds.<\/p>\n

Community members have helped the family out with meals and monetary donations, as well, which has, at times, been overwhelming to the family.<\/p>\n

\u201cIt also felt kind of spoiled, like other people must need this more than us,\u201d said Samantha Castro. \u201cIt\u2019s kind of balancing that, with this being one of those times, it\u2019s OK to accept something like that. I\u2019m extremely grateful.\u201d<\/p>\n

RCDP affects less than 1 in 100,000 babies in the world, but the condition has recently gained more attention<\/a>. One devoted scientist, Dr. Nancy Braverman, convinced a biotech company to take part in a clinical trial in hopes of improving symptoms of RCDP. The trial is set to begin next year.<\/p>\n","protected":false},"excerpt":{"rendered":"

When Brandon and Samantha Castro learned they were expecting their first child, they were just settling into life back in Franklin, Tennessee, with Samantha Castro\u2019s mother, Brandy Blanton. They were saving up for a home of their own and Samantha Castro was working at a nearby high school as a counselor. Her sister, Caitlin Rainey, […]<\/p>\n","protected":false},"author":62,"featured_media":76419,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[4],"tags":[5366],"yoast_head":"\nBaby Elliot, born with rare medical condition, shares the preciousness of life - Live Action News<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/archive.liveaction.org\/news\/baby-elliot-with-rare-medical-condition-shares-the-preciousness-of-life\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Baby Elliot, born with rare medical condition, shares the preciousness of life - Live Action News\" \/>\n<meta property=\"og:description\" content=\"When Brandon and Samantha Castro learned they were expecting their first child, they were just settling into life back in Franklin, Tennessee, with Samantha Castro\u2019s mother, Brandy Blanton. 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