{"id":306,"date":"2017-01-26T20:41:59","date_gmt":"2017-01-27T01:41:59","guid":{"rendered":"https:\/\/www.syracusewomanmag.com\/?p=306"},"modified":"2017-02-23T12:22:07","modified_gmt":"2017-02-23T17:22:07","slug":"inspire-chloe-burian","status":"publish","type":"post","link":"https:\/\/www.syracusewomanmag.com\/?p=306","title":{"rendered":"Chloe Burian"},"content":{"rendered":"

The Heart Hero<\/strong><\/h1>\n

By Lorna Oppedisano | Photography by Sara Felice<\/a>\u00a0<\/em><\/p>\n

Audrey Burian has an unlikely hero: her 5-year-old daughter, Chloe. A little more than a year ago \u2014 after months of testing and surgeries \u2014 Chloe was diagnosed with Marfan syndrome, a rare connective tissue disorder that affects about one in every 5,000 people.<\/p>\n

\u201cWhen we went through [the experience], we were so scared and overwhelmed, and now we feel blessed,\u201d Audrey said, considering the last year in the family\u2019s life. \u201cI know that sounds really weird. It took me a while to get there. But I feel blessed because we know it, and we can manage it.\u201d<\/p>\n

Five years ago, Audrey\u2019s anticipated due date for Chloe came and went. Ten days later, she was induced. Audrey\u2019s placenta abrupted, she started to bleed out and almost lost her youngest daughter. That\u2019s where Chloe\u2019s adventure began, Andrey said.<\/p>\n

The family was worried Chloe might not meet her milestones, and began early intervention. Everything seemed fine, except one thing: her feet were turning in. At 1 year old, she had casts put on her feet. But things kept getting worse.<\/p>\n

At 3 years old, Audrey and her husband noticed Chloe had signs of scoliosis, an ailment not typical for a child that young. They found out she had three cysts on her back. With severe spinal surgery, they were removed.<\/p>\n

Within a month, Chloe had another MRI, and doctors discovered she had a severely tethered spinal cord. Another two months later, she was back in surgery to have it released.<\/p>\n

By November 2015, the family was preparing for Chloe\u2019s foot surgery. Audrey and her husband\u2019s \u201cgut alarms\u201d were sounding. Something wasn\u2019t right, they thought. So Audrey, with the help of her father, took to the Internet.<\/p>\n

\u201cI just started researching her characteristics. She has long arms, long fingers. The cysts. She has crowded teeth. Her teeth are very brittle,\u201d Audrey explained. \u201cAnd everything kept going to this connective tissue disorder.\u201d<\/p>\n

They opted to cancel the scheduled surgery and figure things out. All roads led to the Boston Children\u2019s Hospital. From there, they were directed to see a cardiologist and undergo genetic testing. Not being able to get an appointment for either locally, they went back to Boston a few weeks later, and saw five specialists in two days.<\/p>\n

Then on Dec. 15, 2015, Audrey received the call she\u2019ll never forget. Brimming with emotion, she recalled the day: \u201cThey called us and said, \u2018Chloe has Marfan syndrome.\u2019\u201d<\/p>\n

The voice on the other end of the line was calming, Audrey continued, explaining the hospital had plenty of experience dealing with children diagnosed with the illness, and while it is an incurable, life-threatening disease, Chloe was going to be OK. They suggested the family take time to absorb the information, celebrate the holidays, and come back to Boston in January.<\/p>\n

The next year or so was filled with more than 20 trips to Boston and four surgeries. Chloe was in a wheelchair for most of the summer. She wears a back brace at night. She\u2019ll be on heart medicine for the rest of her life. She\u2019ll never be able to play high impact sports or exercise to exhaustion.<\/p>\n

Needless to say, life is different for the whole family now.<\/p>\n

Audrey has learned so much from her daughter, she said. \u201cShe\u2019s taught me about life and that things aren\u2019t really that bad. To see what she\u2019s been through, she\u2019s probably the strongest person I know,\u201d she said. \u201cAnd through it all, she smiles.\u201d<\/p>\n

On Saturday, April 1, Chloe will kick off the American Heart Association\u2019s 2017 Syracuse Heart Walk at the SRC Arena & Events Center at Onondaga Community College.<\/p>\n

The family got involved with the AHA a few years ago, after Audrey\u2019s mother passed away unexpectedly of a stroke. They returned in 2015, and walked bearing the name Chloe\u2019s Courage. The team ended up raising one of the largest sums of money, and gained the attention of the AHA.<\/p>\n

The organization asked if the Burians wanted to share Chloe\u2019s story. Audrey and her husband are typically private people, she explained, but the drive to assist others affected by the disease forced them out of their comfort zone. Sharing the story has actually helped the family take steps toward healing, Audrey said.<\/p>\n

One of the most important lessons Audrey\u2019s learned from the past few years is to be your own advocate. She hopes to spread knowledge of the signs of Marfan syndrome; knowing those signs is the key to victory, she said.<\/p>\n

\u201cSo now that\u2019s what we want to do,\u201d Audrey said. \u201cGet the word out and help other families.\u201d SWM <\/em><\/strong><\/p>\n

To learn more about the American Heart Association and Heart Walk, visit heart.org.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

The Heart Hero By Lorna Oppedisano | Photography by Sara Felice\u00a0 Audrey Burian has an unlikely hero: her 5-year-old daughter, Chloe. A little more than a year ago \u2014 after months of testing and surgeries \u2014 Chloe was diagnosed with Marfan syndrome, a rare connective tissue disorder that affects about one in every 5,000 people.<\/p>\n","protected":false},"author":3,"featured_media":403,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[99],"tags":[169],"class_list":["post-306","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","tag-january-2017"],"gutentor_comment":0,"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/Inspire_Chloe-Burian_0217_online.jpg?fit=5200%2C3441&ssl=1","jetpack_sharing_enabled":true,"jetpack-related-posts":[{"id":2787,"url":"https:\/\/www.syracusewomanmag.com\/?p=2787","url_meta":{"origin":306,"position":0},"title":"KINDNESS COUNTS: Syracuse\u2019s Salem Hyde Students","author":"Staff","date":"February 2, 2020","format":false,"excerpt":"By Farah Jadran Photos courtesy of SCSD We all know that saying, \u201cI\u2019m too old to change.\u201d Perhaps, you\u2019ve said it yourself. Whether it was a serious statement or your were kidding - I am here along with many others - ready to advocate for change! \u00a0 This month, I\u2026","rel":"","context":"In "Features"","block_context":{"text":"Features","link":"https:\/\/www.syracusewomanmag.com\/?cat=101"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/Group-Kids-Only_FJ.jpg?fit=1200%2C900&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/Group-Kids-Only_FJ.jpg?fit=1200%2C900&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/Group-Kids-Only_FJ.jpg?fit=1200%2C900&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/Group-Kids-Only_FJ.jpg?fit=1200%2C900&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/Group-Kids-Only_FJ.jpg?fit=1200%2C900&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":317,"url":"https:\/\/www.syracusewomanmag.com\/?p=317","url_meta":{"origin":306,"position":1},"title":"White Scarf Women","author":"Staff","date":"January 26, 2017","format":false,"excerpt":"United in White By Lorna Oppedisano | Photography by Alice G. Patterson It\u2019s corny, but it\u2019s true, Kelly Grace Smith warned before she began to tell the story. It starts years ago, in the seventh grade at Jamesville-DeWitt Middle School. Auditions to seek out the Susan B. Anthony speech presenter\u2026","rel":"","context":"In "Causes"","block_context":{"text":"Causes","link":"https:\/\/www.syracusewomanmag.com\/?cat=104"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/Kelly-Grace-Smith-White-Scarf-Project-For-Syracuse-Woman-Magazine-0006b.jpg?fit=1200%2C801&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/Kelly-Grace-Smith-White-Scarf-Project-For-Syracuse-Woman-Magazine-0006b.jpg?fit=1200%2C801&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/Kelly-Grace-Smith-White-Scarf-Project-For-Syracuse-Woman-Magazine-0006b.jpg?fit=1200%2C801&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/Kelly-Grace-Smith-White-Scarf-Project-For-Syracuse-Woman-Magazine-0006b.jpg?fit=1200%2C801&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/Kelly-Grace-Smith-White-Scarf-Project-For-Syracuse-Woman-Magazine-0006b.jpg?fit=1200%2C801&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":2822,"url":"https:\/\/www.syracusewomanmag.com\/?p=2822","url_meta":{"origin":306,"position":2},"title":"INSPIRE: Lindsay and Stella Shaw – Heart Walk Honorees","author":"Staff","date":"February 4, 2020","format":false,"excerpt":"By Carol Radin Photos by Maureen Tricase \u00a0 What does a mother say to her 10-year-old daughter, who is about to take on a big responsibility with her mom in a very public community event? \u201cI tell her,\u201d Lindsay Shaw said, \u201c\u2018You should be blessed you have this opportunity.\u2019 I\u2026","rel":"","context":"In "Causes"","block_context":{"text":"Causes","link":"https:\/\/www.syracusewomanmag.com\/?cat=104"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/fullsizeoutput_236bd.jpeg?fit=800%2C1200&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/fullsizeoutput_236bd.jpeg?fit=800%2C1200&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/fullsizeoutput_236bd.jpeg?fit=800%2C1200&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2020\/01\/fullsizeoutput_236bd.jpeg?fit=800%2C1200&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":3449,"url":"https:\/\/www.syracusewomanmag.com\/?p=3449","url_meta":{"origin":306,"position":3},"title":"Inspire – Dr. Audrey Van Voolen: Founder of Skaneateles Psychology Associates utilizes a strength-based approach","author":"Alyssa Dearborn","date":"January 4, 2023","format":false,"excerpt":"By Kate Hanzalik The idea of playing to your strengths resonates with Audrey Van Voolen, PhD. It applies to her professional trajectory as a psychologist, her approach in treating patients, and the way she works with the providers in her group practice. As a pre-law student at Cornell University, she\u2026","rel":"","context":"In "Inspire"","block_context":{"text":"Inspire","link":"https:\/\/www.syracusewomanmag.com\/?cat=1143"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2023\/01\/Dr-Audrey-Van-Voolen-Syracuse-Woman-Magazine-0001-scaled.jpg?fit=801%2C1200&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2023\/01\/Dr-Audrey-Van-Voolen-Syracuse-Woman-Magazine-0001-scaled.jpg?fit=801%2C1200&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2023\/01\/Dr-Audrey-Van-Voolen-Syracuse-Woman-Magazine-0001-scaled.jpg?fit=801%2C1200&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2023\/01\/Dr-Audrey-Van-Voolen-Syracuse-Woman-Magazine-0001-scaled.jpg?fit=801%2C1200&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":2193,"url":"https:\/\/www.syracusewomanmag.com\/?p=2193","url_meta":{"origin":306,"position":4},"title":"Healer, heal thyself: Elaine Wolf, Life-force Sanctuary","author":"Sarah Hall","date":"January 1, 2019","format":false,"excerpt":"For Elaine Wolf, life and death are inextricably linked. \u201cLife and death, they're one,\u201d she said. \u201cThey're yin and yang. And I think the awareness of both is a gift.\u201d Those who are aware of both, she said, but don\u2019t fear either have \u201ca sense of bigger energetic connections that\u2026","rel":"","context":"In "Cover Story"","block_context":{"text":"Cover Story","link":"https:\/\/www.syracusewomanmag.com\/?cat=100"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/elaine-wolf-life-force-sanctuary-0001.jpg?fit=801%2C1200&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/elaine-wolf-life-force-sanctuary-0001.jpg?fit=801%2C1200&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/elaine-wolf-life-force-sanctuary-0001.jpg?fit=801%2C1200&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/elaine-wolf-life-force-sanctuary-0001.jpg?fit=801%2C1200&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":3041,"url":"https:\/\/www.syracusewomanmag.com\/?p=3041","url_meta":{"origin":306,"position":5},"title":"On the front lines: Team of five female surgeons stands strong at Upstate","author":"Staff","date":"April 23, 2021","format":false,"excerpt":"By Emma Vallelunga \u00a0 They say the sickest of the sick go to Upstate University Hospital in Syracuse, and in the teaching hospital\u2019s Level One trauma center, exactly half of the surgical team who save lives every day are women. These trauma surgeons take pride in what it means to\u2026","rel":"","context":"In "Featured"","block_context":{"text":"Featured","link":"https:\/\/www.syracusewomanmag.com\/?cat=99"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2021\/04\/Trauma_women_02-scaled.jpg?fit=1200%2C800&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2021\/04\/Trauma_women_02-scaled.jpg?fit=1200%2C800&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2021\/04\/Trauma_women_02-scaled.jpg?fit=1200%2C800&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2021\/04\/Trauma_women_02-scaled.jpg?fit=1200%2C800&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2021\/04\/Trauma_women_02-scaled.jpg?fit=1200%2C800&ssl=1&resize=1050%2C600 3x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts\/306","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=306"}],"version-history":[{"count":4,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts\/306\/revisions"}],"predecessor-version":[{"id":580,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts\/306\/revisions\/580"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/media\/403"}],"wp:attachment":[{"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=306"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=306"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=306"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}