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</script><!--[if (!IE)|(gt IE 8)]><!--><script crossorigin="anonymous" src="//static.youcaring.com/js/version/3.38.0/core.min.js"></script><script>var jQueryVersion = '2.1.4';</script><!--<![endif]--><!--[if lte IE 9]><script crossorigin="anonymous" src="//static.youcaring.com/js/version/3.38.0/core.ie9.min.js"></script><script>var jQueryVersion = '1.11.3';</script><div class="section section--turquoise"><p class="labeled-links">You are using an <strong>outdated</strong> browser. Please <a href="//browsehappy.com/">upgrade your browser</a> to improve your experience.</p></div><![endif]--><!--[if lte IE 8]><script crossorigin="anonymous" src="//static.youcaring.com/js/version/3.38.0/core.ie8.min.js"></script><script>var jQueryVersion = '1.11.3';</script><div class="section section--turquoise"><p class="labeled-links">You are using an <strong>outdated</strong> browser. Please <a href="//browsehappy.com/">upgrade your browser</a> to improve your experience.</p></div><![endif]--><script src='//cdn.optimizely.com/js/2105660547.js'></script><link href="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597" rel="canonical" /><title>Addison's Heart with LVNC Cardiomyopathy | Medical Expenses - YouCaring
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href="fundraisers/medical-expenses"><span itemprop='title'>Medical Expenses</span></a></li><li id="bc3" itemscope itemtype="http://data-vocabulary.org/Breadcrumb" itemprop="child"><span itemprop="title">Addison's Heart with LVNC Cardiomyopathy</span><meta itemprop="url" content="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597" /></li></ul></div><div class="profile-hero" itemscope itemtype="http://schema.org/Person"><div class="wrapper wrapper--profile-hero profile-image"><div class="profile-header"><h1 class="background-masker profile-title">Addison's Heart with LVNC Cardiomyopathy
</h1><div class="profile-whoAndWhere"><div><span>For: </span><span itemprop="name">Addison Danna - Mike & Cayla Danna and Family</span></div><div><a id="ctl00_EntireBody_ContentPageHeader_uxLocationLink" href="location/houston-tx">Houston, TX</a><div class="hidden schema" itemprop="address" itemscope itemtype="http://schema.org/PostalAddress"><span itemprop="addressCountry">US
</span><span itemprop="addressLocality">Houston
</span><span itemprop="addressRegion">TX
</span><span itemprop="postalCode"></span></div></div><div><span class="background-masker profileOrganizer"><span>Organizer: </span>Corrie Gilbert
</span></div></div><div id="preload-01" class="profile-header-image"><div class="profile-main-file placeholder effect-fadein"><img id="ctl00_EntireBody_ContentPageHeader_uxFundraiserImage" itemprop="image" src="https://static.youcaring.com/api/uploads/fundraisers/997597/67204bbf-9fd4-4954-b7dc-c28e754d74e2_profile.jpg" src="" alt="Addison&amp;#39;s Heart with LVNC Cardiomyopathy (Addison Danna - Mike &amp;amp; Cayla Danna and Family)" /><div class="heart-share-wrapper"><div class="heart-share-count share-count"><span class="value">0</span> <span class="label">shares</span></div><div class="heart-share"></div></div></div><div class="background-masker gallery js-gallery"><div class="gallery-files gallery-files--inline"></div><div class="gallery-view-btn"><a href="#" class="js-gallery-view-modal-btn">view gallery</a></div></div></div><div class="fundraiserProgress"><div class="fundraiserProgress-summary"><div class="fundraiserProgress-primary-info"><div class="fundraiserProgress-current">$5,735</div><div class="fundraiserProgress-goal">of $25,000 goal.</div></div><div class="fundraiserProgress-secondary-info"><div class="fundraiserProgress-donorCount js-donorCount">Raised by <span class="js-integer">33</span> donors</div></div></div><div class="progress"><div class="progress-bar" style="width: 22%;"><span class="sr-only">22% Complete</span></div></div></div></div><div class="section--profile-socialIcons"><div id="frStatus" class="background-masker fundraiser-status-button"><input type="hidden" name="ctl00$EntireBody$ContentPageHeader$HiddenDaysLeft" id="HiddenDaysLeft" value="0" /><input type="hidden" name="ctl00$EntireBody$ContentPageHeader$HiddenActive" id="HiddenActive" value="True" /><input type="hidden" name="ctl00$EntireBody$ContentPageHeader$HiddenShareCount" id="HiddenShareCount" value="102" /><a id="ctl00_EntireBody_ContentPageHeader_uxDonateLink" class="btn btn-donate btn-block" data-donate="primary" href="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/donate/general">Donate Now</a><p id="preload-02" class="donate-btn-msg">Donate in seconds
</p></div><div class="socialIcons-header socialIcons-header--profile arrow">Every Share Can Raise $37</div><div class="background-masker section--socialIcons"><div class="share_toolbox socialIcons socialIcons--fluidStack socialIcons--profile socialIcons--doNotDisplayOnPhone"><div class="socialIcons--buttons"><a class="share_button_facebook static-share js-trackShare--facebook" data-share_button_id="fr_fb_01" href="https://www.facebook.com/sharer/sharer.php?u=https%3a%2f%2fwww.youcaring.com%2faddisondannamikeandcayladannaandfamily-997597" data-share_fr_id="997597"><span class="sr-only">Share on Facebook</span></a></div></div><div class="share_toolbox socialIcons socialIcons--square socialIcons--profile"><div class="socialIcons--buttons"><a class="share_button_facebook static-share js-trackShare--facebook socialIcons--displayOnlyOnPhone" href="https://www.facebook.com/sharer/sharer.php?u=https%3a%2f%2fwww.youcaring.com%2faddisondannamikeandcayladannaandfamily-997597" data-share_button_id="fr_fb_03" data-share_fr_id="997597"><span class="sr-only">Facebook Share Button</span></a><a class="share_button_twitter js-trackShare--twitter" href="https://twitter.com/intent/tweet?via=youcaring&text=Addison%27s%20Heart%20with%20LVNC%20Cardiomyopathy&url=https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597" data-share_button_id="fr_tw_01" data-share_fr_id="997597"><span class="sr-only">Twitter Share Button</span></a><a class="share_button_email js-trackShare--email" data-share_fr_id="997597" data-share_action_type="share" data-share_object_type="fundraiser" data-share_object_url="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597" data-share_button_id="fr_em_01"><span class="sr-only">Email Share Button</span></a><a class="share_button_sms js-trackShare--sms" href="sms:" style="cursor: pointer" data-formatters="sms" data-share_fr_id="997597"><span class="sr-only">SMS Share Button</span></a></div></div><div class="share-count share-count-primary"><span class="value">0</span> <span class="label">shares</span></div></div></div></div></div><div class="content"><div class="wrapper"></div><div class="wrapper"><div class="profile-panels-primary"><div class="profile-panel" id="share-pane"><div class="share_toolbox socialIcons socialIcons--profile"><div class="socialIcons--buttons"><div class="share-count share-count-secondary"><span class="value">0</span> <span class="label">shares</span></div><a class="share_button_facebook static-share js-trackShare--facebook" href="https://www.facebook.com/sharer/sharer.php?u=https%3a%2f%2fwww.youcaring.com%2faddisondannamikeandcayladannaandfamily-997597" data-share_button_id="fr_fb_03" data-share_fr_id="997597"><span class="sr-only">Facebook Share Button</span></a><a class="share_button_twitter js-trackShare--twitter" href="https://twitter.com/intent/tweet?via=youcaring&text=Addison%27s%20Heart%20with%20LVNC%20Cardiomyopathy&url=https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597" data-share_button_id="fr_tw_01" data-share_fr_id="997597"><span class="sr-only">Twitter Share Button</span></a><a class="share_button_email js-trackShare--email" data-share_fr_id="997597" data-share_action_type="share" data-share_object_type="fundraiser" data-share_button_id="fr_em_01" data-share_object_url="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597"><span class="sr-only">Email Share Button</span></a></div></div></div><div class="profile-panel panel--details" id="details"><h2 class="profile-panel-title expandable-toggle-mobile expanded">The Story</h2><div class="profile-panel-content expandable-content-mobile expanded"><div class="profile-description js-section--details"><div class="profile-description--content js-description"><p>Addison Grace came into this world in the midst of hurricane Harvey on August 25th, 2017 just shy of 32 weeks. Everyone thought Addison was just battling "normal" preemie stuff and would be home in a few weeks. On September 18th, 2017 their world was flipped upside down when they found out that Addison had a rare form of dilated cardiomyopathy called LVNC (Left Ventricular Non-Compaction) and has congestive heart failure. Mike and Cayla were terrified, confused and sickened with worry especially as Cayla’s dad suddenly passed away only 9 months ago due to the exact same rare form of cardiomyopathy. These past few months have been the most trying time of their lives. Knowing that Addison will have to continually fight for her life and the stress of having a medically fragile child is overwhelming.</p><p>Cardiomyopathy is an inoperable disease of the heart muscle and is the leading cause of heart transplant and sudden death in children. It is extremely rare for a child to have symptoms as a newborn and they have been told that children who have heart failure as an infant tend to have a much more complicated course with this disease. Over the past several months the doctors have been trying to find the appropriate medications to manage Addison's heart failure and get her heart functioning to the best of its ability. After 10 weeks of being in the NICU, we know that Addie will be coming home soon and has a long scary road ahead of her. Something as simple as the common cold or other virus could be detrimental to her health. She will be followed closely by the transplant team with Texas Children's Hospital but children with cardiomyopathy typically have multiple hospital stays, frequent doctor visits, numerous medical tests and require many medications to keep their heart functioning properly. </p><div><br>Mike and Cayla have a wonderful support circle of close friends and family and many have asked what they can do. What they need right now is financial help to pay for medical expenses, medications, therapies, and other treatment related expenses that they have incurred and will continue to incur. With Mike being self employed, he does not get PTO or vacation days and has had to take a lot of time away from work to take care of Addison and their other 2 children. Lets arm them with strength in numbers so they can make the best possible choices for Addison's treatment. <br><br>We will be adding updates on Addison the best we can. Thank you so much, I know this means the world to them!</div></div></div><div class="text-center js-hideForSmallDescription" data-content=".js-description"><a class="btn btn-translucent margin-top margin-bottom sectionToggle sectionToggle--details js-sectionToggle js-sectionToggle--details js-more" href="#" data-section=".js-section--details"><span class="inactive-only">Read More</span><span class="active-only">Collapse Description</span></a></div></div><div class="panel--subscribe"><div class="h3">Get updates to this fundraiser</div><div class="input-group input-group-sm"><label for="ctl00_EntireBody_ContentBothCols_ContentWindowNoWrapper_ContentWindow_uxSubscriberEmail" class="sr-only">Subscribe to this fundraiser</label><input name="ctl00$EntireBody$ContentBothCols$ContentWindowNoWrapper$ContentWindow$uxSubscriberEmail" id="ctl00_EntireBody_ContentBothCols_ContentWindowNoWrapper_ContentWindow_uxSubscriberEmail" class="form-control" type="email" placeholder="Enter your email" /><span class="input-group-btn"><input type="submit" name="ctl00$EntireBody$ContentBothCols$ContentWindowNoWrapper$ContentWindow$ctl00" value="Sign Up" onclick="SubscribeToUpdates(); return false;" class="btn btn-success" /></span></div><div class="checkbox"><label><input type="checkbox" checked="checked" class="js-receive-site-updates" />Subscribe to YouCaring emails
</label></div><div class="alert hidden js-subscribe-form-response"></div></div></div><div class="profile-panel panel--updates clearfix" id="updates"><h2 class="profile-panel-title expandable-toggle-mobile">Fundraiser Updates <span class="js-count"></span></h2><div class="profile-panel-content expandable-content-mobile"><div class="update update-810991"><h4 class="update-heading">Posted on <span class="update-date" id="810991">January 12, 2018</span></h4><div class="update-media "><div class="media-wrap has-media"><img id="ctl00_EntireBody_ContentBothCols_ContentWindowNoWrapper_ContentWindow_uxUpdates_ctl00_uxUpdateImage" fileindex="0" src="https://static.youcaring.com/api/uploads/fundraisers/997597/updates/48fde6c8-aeda-44f4-88e2-344e585ca52b_update_profile.jpg" alt="UpdateImage" /></div></div><div class="update-content update-content-810991"><h4>Posted on <span class="update-date" id="810991">January 12, 2018</span></h4>The past 2 days have been a huge wake up call to us and showed us how quickly things can change. Yesterday we thought we only had a scheduled genetics appointment, but since Addison’s pulse ox machine has been alarming quite a bit for high heart rate, cardiology wanted us to stop by for a quick check and to place a 24 hour Holter monitor on her (we have our next in depth heart check next week). Cardiology also wanted Addison to be seen with the pediatrician first thing today since it’s a long weekend and her heart rates have been off. Our “quick” check turned into a chest X-ray, abdominal ultrasound and a whole slew of lab work! We were able to come home without being admitted thankfully but are now under strict Instructions for the weekend until heading back on Tuesday. <br><br>These kinds of days throw a huge wrench into our family and remind us of how trying the future will be. Figuring out our new normal is extremely difficult and one of the many reasons why Addison’s fundraiser is here. We are so thankful for your continued support and prayers for our sweet baby girl!! ❤️
</div><div style="clear:both;"></div><div class="update-expand-toggle text-right text-bold js-hideForSmallDescription" data-content=".update-content-810991"><a class="margin-bottom sectionToggle sectionToggle--details js-sectionToggle js-sectionToggle--details js-section--details" href="#" data-section=".update-content-810991"><span class="inactive-only">Read more...</span><span class="active-only">Collapse update</span></a></div><div class="update-share"><div class="section--socialIcons"><div class="share_toolbox socialIcons socialIcons--square socialIcons--profile"><div class="socialIcons--buttons"><a class="share_button_facebook js-trackShare--facebook" data-share_fr_id="997597" data-share_action_type="share" data-share_object_type="fundraiser_update" data-share_button_id="fr_fb_05" data-share_object_url="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/update/810991"><span class="sr-only">Facebook Share Button</span></a><a class="share_button_twitter js-trackShare--twitter" href="https://twitter.com/intent/tweet?via=youcaring&text=Addison%27s%20Heart%20with%20LVNC%20Cardiomyopathy&url=https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/update/810991" data-share_button_id="fr_tw_02" data-share_fr_id="997597"><span class="sr-only">Twitter Share Button</span></a><a class="share_button_email js-trackShare--email" data-share_fr_id="997597" data-share_action_type="share" data-share_object_type="fundraiser" data-share_button_id="fr_em_02" data-share_object_url="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/update/810991"><span class="sr-only">Email Share Button</span></a><a class="share_button_sms js-trackShare--sms" href="sms:" style="cursor: pointer" data-formatters="sms" data-share_fr_id="997597"><span class="sr-only">SMS Share Button</span></a></div></div></div></div></div><hr class="margin-bottom-small" /><div class="update update-791618"><h4 class="update-heading">Posted on <span class="update-date" id="791618">December 14, 2017</span></h4><div class="update-media hidden"><div class="media-wrap "><img id="ctl00_EntireBody_ContentBothCols_ContentWindowNoWrapper_ContentWindow_uxUpdates_ctl02_uxUpdateImage" fileindex="0" src="" alt="UpdateImage" /></div></div><div class="update-content update-content-791618"><h4>Posted on <span class="update-date" id="791618">December 14, 2017</span></h4><p>Addison has been home just over a month now and we are getting into somewhat of a routine. We are very grateful that she has not had added challenges from usual sickness so far and hope that it stays that way for the rest of this awful cold and flu season. Addison is doing pretty good, her heart failure is remaining under control with her medications. We have had many doctor appointments the past few weeks (17 to be exact) and are trying to get into a workable rhythm with her care. We saw GI for her feeding difficulties and made changes to her fortifier and added some meds for her constipation. Her reflux is still horrible but we are holding out to hopefully see a difference soon. She is still choking on her feedings/reflux and we are having to stimulate her because her oxygen levels drop quickly and she turns grey and stops breathing. We did a swallow study to see what was happening and we discovered that she is swallowing great (yeah!!!) but she is refluxing while eating and it is causing her to choke and aspirate. All of her doctors are really nervous with the fact that she turns grey and becomes limp with these episodes so we are working a way to keep her safe. Since she is fluid restricted and needs the fortifiers/extra calories in her bottle to help her gain weight we really have limited options. She uses an apnea monitor but her doctors have recently suggested adding a pulse ox and suction machine so at least we have the ability to know and suction her incase of an emergency. We see the pulmonologist later this month so we will get his take on it and go from there. She is slowly gaining weight and is up to 9lbs! (pretty small for almost being 4 months old but she has been slow and steady which is all we can ask for).  We found out that a few weeks ago her ENT and GI doctors referred her to the Complex Care Clinic at TCH which is basically a pediatrician for children with complex medical needs that need more individualized care. At first we didn’t think too much about it because we were happy with our pediatrician, but he called me last week to say that he would feel more comfortable with Addison being taken care of at the Clinic. He has always been very honest about the fact that in his 20+ years of being a pediatrician he has only seen one child with a cardiomyopathy. He wants her to have the best possible care and feels that the clinic is the right fit for her right now. I have heard great things about them and we are looking forward to our first appointment with them tomorrow.</p><p><p>This past several months have been really tough on us all. We are slowly emerging from crisis mode and becoming more accepting of our path with Addison, but it is hard. We KNOW that she was given to us for a reason and her life has a purpose. We have good days and bad days and often think why us, why Addison. She doesn’t deserve this…no kid does. At this point I feel like the fear and anxiety will never leave so for now we take it all one day at a time and every good day that Addison has is another good day for us!</p></div><div style="clear:both;"></div><div class="update-expand-toggle text-right text-bold js-hideForSmallDescription" data-content=".update-content-791618"><a class="margin-bottom sectionToggle sectionToggle--details js-sectionToggle js-sectionToggle--details js-section--details" href="#" data-section=".update-content-791618"><span class="inactive-only">Read more...</span><span class="active-only">Collapse update</span></a></div><div class="update-share"><div class="section--socialIcons"><div class="share_toolbox socialIcons socialIcons--square socialIcons--profile"><div class="socialIcons--buttons"><a class="share_button_facebook js-trackShare--facebook" data-share_fr_id="997597" data-share_action_type="share" data-share_object_type="fundraiser_update" data-share_button_id="fr_fb_05" data-share_object_url="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/update/791618"><span class="sr-only">Facebook Share Button</span></a><a class="share_button_twitter js-trackShare--twitter" href="https://twitter.com/intent/tweet?via=youcaring&text=Addison%27s%20Heart%20with%20LVNC%20Cardiomyopathy&url=https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/update/791618" data-share_button_id="fr_tw_02" data-share_fr_id="997597"><span class="sr-only">Twitter Share Button</span></a><a class="share_button_email js-trackShare--email" data-share_fr_id="997597" data-share_action_type="share" data-share_object_type="fundraiser" data-share_button_id="fr_em_02" data-share_object_url="https://www.youcaring.com/addisondannamikeandcayladannaandfamily-997597/update/791618"><span class="sr-only">Email Share Button</span></a><a class="share_button_sms js-trackShare--sms" href="sms:" style="cursor: pointer" data-formatters="sms" data-share_fr_id="997597"><span class="sr-only">SMS Share Button</span></a></div></div></div></div></div><hr class="margin-bottom-small" /><div class="update update-773741"><h4 class="update-heading">Posted on <span class="update-date" id="773741">November 22, 2017</span></h4><div class="update-media "><div class="media-wrap has-media"><img id="ctl00_EntireBody_ContentBothCols_ContentWindowNoWrapper_ContentWindow_uxUpdates_ctl04_uxUpdateImage" fileindex="0" src="https://static.youcaring.com/api/uploads/fundraisers/997597/updates/f2051c2c-0d17-4c02-8a10-0e6d500029ed_update_profile.jpg" alt="UpdateImage" /></div></div><div class="update-content update-content-773741"><h4>Posted on <span class="update-date" id="773741">November 22, 2017</span></h4>UPDATE: Addison’s appointment went well yesterday and her heart function is the same as when we left the NICU. Her blood pressures were running low so we didn’t make any changes to her medications. They were fine with that since she is already on pretty high doses. She gained some weight, slower than they would like but we are trying to establish a bench mark and will continue to watch it closely. We added a GI specialist to help us with the feeding, reflux and weight gain issues and next week she starts speech therapy to help her learn to feed better. We got a lot of questions answered and feel confident in her care as they have made her doctors easily accessible for whenever we need them and also have access to her cardiomyopathy nurse 24/7. <br><br>We hope everyone has a Happy Thanksgiving with friends and family. There is a lot to be thankful for ❤️
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