{"id":83998,"date":"2016-01-03T10:08:41","date_gmt":"2016-01-03T15:08:41","guid":{"rendered":"\/news\/?p=83998"},"modified":"2016-01-02T20:10:29","modified_gmt":"2016-01-03T01:10:29","slug":"parents-fighting-for-daughters-life-why-wouldnt-we-try","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/parents-fighting-for-daughters-life-why-wouldnt-we-try\/","title":{"rendered":"Parents fighting for daughter\u2019s life: \u201cWhy wouldn\u2019t we try?\u201d"},"content":{"rendered":"
<\/div>

Chris and Natalie McCrone were excited to learn they would be adding twins to their family of four, but at 12 weeks gestation they learned one of the twins had died. They were devastated, and that loss would soon be followed by more heartbreaking news.<\/p>\n

At 35 weeks it was discovered that their baby girl, named Cassidy<\/a>, was not growing properly. According to the family blog<\/a>, Cassidy\u2019s limbs were not measuring at the right size for a baby her age. Her humerus bones were measuring 18 weeks and her femur bones at 27 weeks.<\/p>\n

<\/p>\n

Doctors warned the McCrones that Cassidy might not survive birth or may need to be on a ventilator to breathe. However, the couple was determined to bring their little girl home, and before they headed to the hospital for a planned C-section, they made sure that their home was ready for the baby\u2019s arrival.<\/p>\n

\"Cassidy.

Cassidy. Photo via Facebook.<\/p><\/div>\n

\u201cWe just tried to stay positive, we tried not to think that way,\u201d Natalie McCrone told The Daily Record. \u201cWhat kept me going was the fact she was still moving, still growing. [\u2026] It was heartbreaking, and we\u2019d already had the heartbreak of losing one of the twins. We were crumbling inside but had to remain positive, and just hope and pray everything turned out alright.\u201d<\/p>\n

Cassidy was born on March 25, 2015 and did very well, surprising doctors by breathing on her own. At four weeks old she was finally diagnosed with rhizomelic chondrodysplasia punctata (RCDP), a rare genetic condition which most people die from within the first year of life.<\/p>\n

\u201cShe\u2019d been in four weeks before it came back that she had Rhizomelic CDP, which is the worst type,\u201d Natalie McCrone told the Daily Record. \u201cIt\u2019s the most fatal and life limiting. We looked into it some more but everything we found on Google was horrendous, saying 60 percent of people didn\u2019t survive the first year. Then we found a website called Rhizo Kids<\/a>, and that told us a wee bit more about it.\u201d<\/p>\n

There are 57 people in the world currently living with RCDP. Cassidy is the only person with the condition in Scotland, and her doctors had never had a patient with the condition before, which meant the McCrones were teaching the doctors what they were learning.<\/p>\n

\"The

The McCrone Family. Photo via Facebook.<\/p><\/div>\n

\u201cSometimes they would even ask us to explain what our knowledge was, and that was quite hard for us because they were caring for our daughter,\u201d she explained. \u201cWe expected them to have the answers.\u201d<\/p>\n

Since her birth, Cassidy has done well, surviving longer than expected and having surgery to correct cataracts. She has also been fitted with a hearing aid.<\/p>\n

The McCrones got into contact with other families and learned of a clinical trial happening in the United States. They are currently raising money to cover the high cost of getting Cassidy into the trial and moving the family to the US for at least six months. It could be Cassidy\u2019s only hope of surviving longer.<\/p>\n

\u201cIt\u2019s a chance we have got to take, we\u2019ve got to try,\u201d said Natalie McCrone. \u201cYou can\u2019t go through life thinking \u2018what if\u2019. Right now she doesn\u2019t even stand a chance so why wouldn\u2019t we try?\u201d<\/p>\n

The trial is set to begin in July.<\/p>\n","protected":false},"excerpt":{"rendered":"

Chris and Natalie McCrone were excited to learn they would be adding twins to their family of four, but at 12 weeks gestation they learned one of the twins had died. They were devastated, and that loss would soon be followed by more heartbreaking news. At 35 weeks it was discovered that their baby girl, […]<\/p>\n","protected":false},"author":62,"featured_media":84231,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[4],"tags":[6967,6968,6969,5366],"yoast_head":"\nMother fighting for daughter\u2019s life: \u201cwhy wouldn\u2019t we try?\u201d<\/title>\n<meta name=\"description\" content=\"After their daughter was diagnosed with a rare genetic condition, this family jumped into action to try and save her life.\" \/>\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\/parents-fighting-for-daughters-life-why-wouldnt-we-try\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mother fighting for 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