Heartbreaking rare diagnosis for baby "Coey"
<p>A devastated family have made an emotional plea to help their son Coen. </p>
<p>Known as Coey to his family and friends, the 11-month-old boy was recently diagnosed with Gabriele de vries Syndrome: an incredibly rare disease shared with only 14 other children in the world. </p>
<p>Close family friend Jodie Schroder is organising the appeal on behalf of Coey's parents, Hayley and Trent van der Jagt, in order to help raise awareness for the disorder, and appeal for donations to help with extensive medical costs. </p>
<p>According to the Caring for Coey <a href="https://www.gofundme.com/f/caring-for-coey" target="_blank" rel="noopener">GoFundMe</a> page, Gabriele de vries Syndrome has varied outcomes, and "is characteristiced by mild-to-profound developmental delay / intellectual disability and a wide spectrum of functional and morphologic abnormalities." </p>
<p>"People with Gabriele de vries often experience feeding difficulties and other systemic difficulties, including congenital brain, eye, heart, kidney, genital, and/or skeletal system anomalies."</p>
<p>For most of Coey's life, he has been fed with a nasal gastric tube due to a series of complications with his birth and numerous physical difficulties. </p>
<p>Due to his extensive medical problems, Coey suffers from "recurrent infections requiring multiple hospitalisations at Campbelltown, Randwick and Westmead Children’s hospitals," which has been "considerably stressful for his family."</p>
<p>According to the donation page, "Children with Gabriele de vries syndrome are also more likely to experience difficulties associated with anxiety, ADHD, Autism and Schizoaffective disorder. Currently Coen has also been diagnosed with a Global Developmental Delay secondary to his Gabriele de vries syndrome."</p>
<p>Jodie created the page to ask for donations to help with the "substantial" costs of Coey's treatment, "that are not met due to limited resources under the NDIS."</p>
<p>The costs Coey's family are met with include physiotherapy, speech therapy, occupational therapy, "out-of-pocket medical treatment" and "psychological therapies as he gets older."</p>
<p>All the money raised on the page will go directly to Coey's numerous treatments, as well as "other expenses over the next few years including accommodation close to hospitals and day-to-day living expenses."</p>
<p>On top of Coey's diagnosis, his mum Hayley is also suffering from a work accident that requires surgery and extensive physical therapy, which has placed an additional "emotional and financial stress on their family."</p>
<p>Jodie says in the post that despite his many challenges at such a young age, Coey has an "infectious giggle" and "he adores his big brother, Miles", and hopes any donations will help "see him flourish and grow to become the healthiest, warm-hearted boy we all know him to be."</p>
<p>Check out the <span style="font-family: -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, Oxygen, Ubuntu, Cantarell, 'Open Sans', 'Helvetica Neue', sans-serif;">Caring for Coey</span><span style="font-family: -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, Oxygen, Ubuntu, Cantarell, 'Open Sans', 'Helvetica Neue', sans-serif;"> </span><a style="font-family: -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, Oxygen, Ubuntu, Cantarell, 'Open Sans', 'Helvetica Neue', sans-serif;" href="https://www.gofundme.com/f/caring-for-coey" target="_blank" rel="noopener">GoFundMe</a><span style="font-family: -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, Oxygen, Ubuntu, Cantarell, 'Open Sans', 'Helvetica Neue', sans-serif;"> </span><span style="font-family: -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, Oxygen, Ubuntu, Cantarell, 'Open Sans', 'Helvetica Neue', sans-serif;">page for more information and to show your support.</span></p>
<p><em>Image credits: GoFundMe</em></p>
