{"id":1763,"date":"2018-04-30T09:00:42","date_gmt":"2018-04-30T13:00:42","guid":{"rendered":"https:\/\/www.syracusewomanmag.com\/?p=1763"},"modified":"2018-04-30T10:45:30","modified_gmt":"2018-04-30T14:45:30","slug":"nappa-family","status":"publish","type":"post","link":"https:\/\/www.syracusewomanmag.com\/?p=1763","title":{"rendered":"Nappa Family"},"content":{"rendered":"

It Takes a Family\u00a0<\/em><\/h1>\n

By Lorna Oppedisano | Photography by Alice G. Patterson<\/a>\u00a0<\/em><\/p>\n

\"\"<\/a><\/p>\n

\u201cWhen you\u2019re a mom and you have kids with cystic fibrosis, you wake up in the morning and every day is unpredictable, because your day could change from minute to minute,\u201d Cindy Nappa said.<\/p>\n

Cindy\u2019s connection to CF began when she was a nurse at the CF clinic at Upstate Hospital about two decades ago. Then, in 2005, her daughter, Amy Nappa, had her first child, Gracie. After a few weeks, Gracie was diagnosed with CF, \u201ca progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time,\u201d according to the Cystic Fibrosis Foundation. The disease is caused by a defective gene that causes buildup of mucus in the lungs, pancreas and other organs.<\/p>\n

For the first year of Gracie\u2019s life, the family was in and out of the hospital quite frequently. They celebrated her first birthday in the hospital cafeteria, they remembered.<\/p>\n

A couple years later, Amy went for an ultrasound on her second child, Joey. They discovered blockage in his intestines, and sent Amy to a specialist. After another test, she was told Joey had CF, too.<\/p>\n

\u201cEven though they have the same [disease], they\u2019re two completely different children when it comes to CF,\u201d Amy said.<\/p>\n

Cystic fibrosis is caused by two copies of the defective CF gene containing an abnormality called a mutation. There are more than 1,700 known mutations of the disease, according to the CFF.<\/p>\n

While Gracie and Joey have the same mutation, it is expressed differently in each child, resulting in differently predominant symptoms; Gracie\u2019s symptoms are primarily respiratory and Joey\u2019s are digestive.<\/p>\n

For Amy\u2019s family, each day is scheduled around a variety of treatments for Gracie and Joey, ranging from airway clearance therapies to inhaled medicines to enzyme supplements. Each child\u2019s treatments take close to three hours, if not longer, each day.<\/p>\n

\u201cThe hardest part sometimes is managing the treatments. When are you going to do it? What do you have to do? What time do you have to be home?\u201d Amy said, adding that any kind of travel \u2014 even an overnight at a friend\u2019s house \u2014 adds another level of difficulty.<\/p>\n

\u201cThere is never a break from CF,\u201d Cindy said. \u201cIt doesn\u2019t matter what day of the week, what day of the month, where you\u2019re going or what you\u2019re doing. It\u2019s the same routine with treatments, medications and airway clearance therapies. You can\u2019t miss any treatments ever, regardless of other things happening or plans that day.\u201d<\/p>\n

Adding yet another challenge to the Nappa family\u2019s daily routine is the fact that people with CF are encouraged not to be around each other, since \u201cmedical studies show that people with CF are at particular risk of spreading certain germs among others with the disease,\u201d according to the CFF.<\/p>\n

The foundation warns people with CF to stay at least six feet apart, since that\u2019s the distance germs can spread from a sneeze or cough. Having two children with CF can present a challenge.<\/p>\n

\u201cYou just do the best that you can,\u201d Amy said, explaining that Gracie and Joey never share anything that touches their mouths.<\/p>\n

Since Cindy first encountered CF at Upstate, a great deal of research has been done, resulting in medical advances that have added years to the lives of those diagnosed with CF. According to the CFF, in 1989, the median predicted age of survival was 29. In 2000, it was 32 years old. Now, people with CF are living into their 30s, 40s and beyond.<\/p>\n

\u201cIt truly is amazing,\u201d said Tracy Nappa Marino, Amy\u2019s sister and the administrative manager at the CNY chapter of the CFF. \u201cWe owe it to the science, which is owed to the fundraising, which is owed to the families\u2019 efforts who support us in the community, and the businesses and corporations that support us in the community, as well.\u201d<\/p>\n

The entire Nappa family has been involved with the CFF since Gracie\u2019s diagnosis. Amy\u2019s attended the annual Great Strides walk since 2006. Cindy began volunteering with the organization in 2005. Tracy started by joining and chairing fundraising event committees, and became a CFF employee about five years ago.<\/p>\n

Working for the foundation has given Tracy a unique perspective. She sees both sides of it, which gives her insight to the emotional, mental and physical struggles families dealing with CF encounter on a daily basis.<\/p>\n

In her office at work, she has a quote on her wall \u2014 \u201cRemember why you started.\u201d<\/p>\n

\u201cHaving these two and their smiling faces definitely keeps me focused and [helps me] stay the course, even when some of the days are a little
\ntough,\u201d Tracy said. \u201cIt\u2019s easy to remember why.\u201d SWM<\/em><\/p>\n

May is Cystic Fibrosis Awareness Month. Join in the annual Great\u00a0<\/em>Strides walk on Saturday, May 12, at Long Branch Park. For more\u00a0<\/em>information on the Cystic Fibrosis Foundation, and to find out how you\u00a0<\/em>can get involved with the Central New York chapter, visit cff.org\/CentralNY<\/a>.<\/em><\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

It Takes a Family\u00a0 By Lorna Oppedisano | Photography by Alice G. Patterson\u00a0 \u201cWhen you\u2019re a mom and you have kids with cystic fibrosis, you wake up in the morning and every day is unpredictable, because your day could change from minute to minute,\u201d Cindy Nappa said. Cindy\u2019s connection to CF began when she was…<\/p>\n","protected":false},"author":3,"featured_media":1803,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[99],"tags":[618,617,223,599,600,616],"class_list":["post-1763","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","tag-amy-nappa","tag-cindy-nappa","tag-cystic-fibrosis-foundation","tag-may-2018","tag-the-family-edition","tag-tracy-nappa"],"gutentor_comment":0,"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/04\/Tracy-Marino-cystic-fibrosis-org-syracuse-0011-2.jpg?fit=5200%2C3470&ssl=1","jetpack_sharing_enabled":true,"jetpack-related-posts":[{"id":700,"url":"https:\/\/www.syracusewomanmag.com\/?p=700","url_meta":{"origin":1763,"position":0},"title":"Mary Michaels","author":"Staff","date":"April 29, 2017","format":false,"excerpt":"Team Tess' Tomorrows By Lorna Oppedisano | Photography by Alice G. Patterson In 1955, a group of parents got together. They had one thing in common: their young children had been diagnosed with a chronic, incurable disease \u2014 cystic fibrosis. The children weren\u2019t expected to live past elementary school. The\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\/2017\/04\/Mary-Michaels-Cystic-Fibrosis-Research-Advocate-0007.jpg?fit=1200%2C802&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/04\/Mary-Michaels-Cystic-Fibrosis-Research-Advocate-0007.jpg?fit=1200%2C802&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/04\/Mary-Michaels-Cystic-Fibrosis-Research-Advocate-0007.jpg?fit=1200%2C802&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/04\/Mary-Michaels-Cystic-Fibrosis-Research-Advocate-0007.jpg?fit=1200%2C802&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/04\/Mary-Michaels-Cystic-Fibrosis-Research-Advocate-0007.jpg?fit=1200%2C802&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":3270,"url":"https:\/\/www.syracusewomanmag.com\/?p=3270","url_meta":{"origin":1763,"position":1},"title":"Inspire: Marygrace Fronk – Keeping fit while helping others","author":"Alyssa Dearborn","date":"August 30, 2022","format":false,"excerpt":"By Norah Machia Marygrace Fronk discovered many years ago that half-marathons (13.1 miles in distance) are not just for runners. They are also for walkers of any age. At age 70, Fronk has completed 38 of them, and she is still going strong. She walked in her first half-marathon in\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\/2022\/08\/Marygrace-Fronk-without-glasses-2-scaled.jpg?fit=1200%2C1190&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2022\/08\/Marygrace-Fronk-without-glasses-2-scaled.jpg?fit=1200%2C1190&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2022\/08\/Marygrace-Fronk-without-glasses-2-scaled.jpg?fit=1200%2C1190&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2022\/08\/Marygrace-Fronk-without-glasses-2-scaled.jpg?fit=1200%2C1190&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2022\/08\/Marygrace-Fronk-without-glasses-2-scaled.jpg?fit=1200%2C1190&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":1078,"url":"https:\/\/www.syracusewomanmag.com\/?p=1078","url_meta":{"origin":1763,"position":2},"title":"Hopeful Grateful Strong","author":"Staff","date":"September 29, 2017","format":false,"excerpt":"The Caregiver By Amy Lowe This story is an excerpt from \u201cHopeful \u2014 Grateful \u2014 Strong,\u201d a collection of survivor stories from the YMCA of Greater Syracuse\u2019s cancer support programs. I have always been a caregiver. I took care of my medically fragile parents, in-laws and son, and also my\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\/cropped-SWM-logo-use-this-one.jpg?fit=930%2C448&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/cropped-SWM-logo-use-this-one.jpg?fit=930%2C448&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/cropped-SWM-logo-use-this-one.jpg?fit=930%2C448&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/01\/cropped-SWM-logo-use-this-one.jpg?fit=930%2C448&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":1970,"url":"https:\/\/www.syracusewomanmag.com\/?p=1970","url_meta":{"origin":1763,"position":3},"title":"Cindy Ormond","author":"Staff","date":"August 2, 2018","format":false,"excerpt":"Celebrating Love\u00a0 By Rachel Foster | Photography by Alice G. Patterson Cindy Ormond knows how to throw a good party. The owner of Ormond Entertainment, Cindy specializes in putting on memorable wedding receptions for couples throughout Central New York. It\u2019s her calling, she said. \u201cThe stars aligned. The signs were\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\/2018\/08\/Cindy-Ormond-Ormond-Entertainment-0001RT.jpg?fit=1200%2C801&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Cindy-Ormond-Ormond-Entertainment-0001RT.jpg?fit=1200%2C801&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Cindy-Ormond-Ormond-Entertainment-0001RT.jpg?fit=1200%2C801&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Cindy-Ormond-Ormond-Entertainment-0001RT.jpg?fit=1200%2C801&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/08\/Cindy-Ormond-Ormond-Entertainment-0001RT.jpg?fit=1200%2C801&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":1677,"url":"https:\/\/www.syracusewomanmag.com\/?p=1677","url_meta":{"origin":1763,"position":4},"title":"Cindy Dowd Greene","author":"Staff","date":"March 29, 2018","format":false,"excerpt":"Changing the World with Science\u00a0 By Lorna Oppedisano | Photography by Alexis Emm\u00a0 \u201cHere in Central New York, we\u2019re going to be really making a huge difference, and we\u2019re going to impact people\u2019s lives across the world,\u201d said Cindy Dowd Greene, president of Quadrant Epigenetics, LLC, and COO of Quadrant\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\/2018\/03\/SWM-APRIL-2018-Alexis-Emm-Photo-4-4.jpg?fit=1200%2C797&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/03\/SWM-APRIL-2018-Alexis-Emm-Photo-4-4.jpg?fit=1200%2C797&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/03\/SWM-APRIL-2018-Alexis-Emm-Photo-4-4.jpg?fit=1200%2C797&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/03\/SWM-APRIL-2018-Alexis-Emm-Photo-4-4.jpg?fit=1200%2C797&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/03\/SWM-APRIL-2018-Alexis-Emm-Photo-4-4.jpg?fit=1200%2C797&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":2217,"url":"https:\/\/www.syracusewomanmag.com\/?p=2217","url_meta":{"origin":1763,"position":5},"title":"Inspire: Juli Boeheim, SU basketball\u2019s mother figure","author":"Staff","date":"January 3, 2019","format":false,"excerpt":"By Matthew Gutierrez The wife of one of the most recognizable figures in Central New York is standing inside her kitchen, but her thoughts are elsewhere. Because, well, it\u2019s gotten a lot quieter at home: In August, Juli Boeheim sent her twins off to college. The year before, her oldest\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\/2018\/12\/Juli-Boeheim.jpg?fit=1200%2C801&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/Juli-Boeheim.jpg?fit=1200%2C801&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/Juli-Boeheim.jpg?fit=1200%2C801&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/Juli-Boeheim.jpg?fit=1200%2C801&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/12\/Juli-Boeheim.jpg?fit=1200%2C801&ssl=1&resize=1050%2C600 3x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts\/1763","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=1763"}],"version-history":[{"count":4,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts\/1763\/revisions"}],"predecessor-version":[{"id":1805,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/posts\/1763\/revisions\/1805"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=\/wp\/v2\/media\/1803"}],"wp:attachment":[{"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1763"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1763"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.syracusewomanmag.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1763"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}