{"id":3545,"date":"2020-06-12T21:47:44","date_gmt":"2020-06-13T01:47:44","guid":{"rendered":"https:\/\/childrenshealing.org\/beta\/?p=3545"},"modified":"2021-09-27T21:55:39","modified_gmt":"2021-09-28T01:55:39","slug":"the-best-place-to-have-fun","status":"publish","type":"post","link":"https:\/\/childrenshealing.org\/beta\/2020\/06\/12\/the-best-place-to-have-fun\/","title":{"rendered":"The Best Place to Have Fun"},"content":{"rendered":"\n\t<section class=\"section\" id=\"section_1687696871\">\n\t\t<div class=\"section-bg fill\" >\n\t\t\t\t\t\t\t\t\t\n\t\t\t\n\n\t\t<\/div>\n\n\t\t\n\n\t\t<div class=\"section-content relative\">\n\t\t\t\n<div class=\"row row-collapse\"  id=\"row-1269574069\">\n\n\t<div id=\"col-1622706632\" class=\"col small-12 large-12\"  >\n\t\t\t\t<div class=\"col-inner\"  >\n\t\t\t\n\t\t\t\n<p class=\"lead\">Today, my daughter\u2019s physician asked me, \u201cHow do you envision your daughter\u2019s death?\u201d Let that sink in for a minute\u2026.<\/p>\n<p>For most parents, that question would be shocking and unsettling. Some would even refuse to answer. Over the last 3 years I have had plenty of time to think of this very scenario. That day was the first time I said the answer out loud:<\/p>\n<blockquote><p>\u201cI think Addy will become blind, lose the ability to walk, talk and eventually her lungs will fail.\u201d<\/p><\/blockquote>\n\t<div id=\"gap-1952923299\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-1952923299 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div class=\"img has-hover x md-x lg-x y md-y lg-y\" id=\"image_1006145914\">\n\t\t\t\t\t\t\t\t<div class=\"img-inner dark\" >\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1020\" height=\"690\" src=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5216-1183x800.jpg\" class=\"attachment-large size-large\" alt=\"\" srcset=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5216-1183x800.jpg 1183w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5216-591x400.jpg 591w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5216-768x519.jpg 768w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5216-510x345.jpg 510w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5216.jpg 1242w\" sizes=\"auto, (max-width: 1020px) 100vw, 1020px\" \/>\t\t\t\t\t\t\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\n<style>\n#image_1006145914 {\n  width: 100%;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"text-1924910131\" class=\"text\">\n\t\t\n<p><strong>Addy as a newborn in the hospital.<\/strong><\/p>\n\t\t\n<style>\n#text-1924910131 {\n  font-size: 0.85rem;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"gap-1327312813\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-1327312813 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n<p>My name is Lisa. My husband Eric and I have twin 5-year old girls: Addison (Addy) and Norah. Addy is our miracle girl. She is battling a rare form of mitochondrial disease, known as Leigh Syndrome, which she was diagnosed with at 2-years old. It is a severe neurological disorder characterized by progressive loss of mental and movement abilities. It typically results in death within 2-3 years, usually due to respiratory failure. She also struggles with dysphagia, gastroparesis, Sandifer Syndrome, cyclic vomiting syndrome, nystagmus, exotropia, asthma, and metabolic acidosis, among other ailments.<\/p>\n\t<div id=\"gap-955614841\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-955614841 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div class=\"img has-hover x md-x lg-x y md-y lg-y\" id=\"image_627006807\">\n\t\t\t\t\t\t\t\t<div class=\"img-inner dark\" >\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1020\" height=\"680\" src=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1-1200x800.jpg\" class=\"attachment-large size-large\" alt=\"\" srcset=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1-1200x800.jpg 1200w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1-600x400.jpg 600w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1-768x512.jpg 768w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1-1536x1024.jpg 1536w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1-510x340.jpg 510w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_8685-2048x1365-1.jpg 2048w\" sizes=\"auto, (max-width: 1020px) 100vw, 1020px\" \/>\t\t\t\t\t\t\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\n<style>\n#image_627006807 {\n  width: 100%;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"text-3095605299\" class=\"text\">\n\t\t\n<p><strong>From left to right: Lisa, Norah, Addison, and Eric<\/strong><\/p>\n\t\t\n<style>\n#text-3095605299 {\n  font-size: 0.85rem;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"gap-79356606\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-79356606 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n<p>As an infant, I knew something was \u2018wrong\u2019 with Addy. I felt that for the first year of her life she was either screaming or sleeping. She struggled with reflux, vomiting, abdominal pain and constipation. At 9 months old she had stopped gaining weight and she had stopped eating entirely. At that time, we thought the answer was as simple as a feeding tube. Since we had a way to feed her I felt she would eventually grow out of it. But, our story took a different turn.<\/p>\n<p>We worry about what the girls are exposed to all the time. And are so grateful to have a safe, clean place for them to play. They wake up and ask what day it is to see if we are going to play at the Children\u2019s Healing Center.<\/p>\n<blockquote><p>\u201cThey wake up and ask what day it is to see if we are going to play at the Children\u2019s Healing Center.\u201d<\/p><\/blockquote>\n\t<div id=\"gap-1977824063\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-1977824063 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div class=\"img has-hover x md-x lg-x y md-y lg-y\" id=\"image_89015666\">\n\t\t\t\t\t\t\t\t<div class=\"img-inner dark\" >\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1020\" height=\"522\" src=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1-1400x717.jpg\" class=\"attachment-large size-large\" alt=\"\" srcset=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1-1400x717.jpg 1400w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1-781x400.jpg 781w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1-768x393.jpg 768w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1-1536x787.jpg 1536w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1-510x261.jpg 510w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/IMG_1533-2048x1049-1.jpg 2048w\" sizes=\"auto, (max-width: 1020px) 100vw, 1020px\" \/>\t\t\t\t\t\t\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\n<style>\n#image_89015666 {\n  width: 100%;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"text-1511172255\" class=\"text\">\n\t\t\n<p><strong>Addy and Norah playing together at the Center!<\/strong><\/p>\n\t\t\n<style>\n#text-1511172255 {\n  font-size: 0.85rem;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"gap-1858208517\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-1858208517 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n<p>If you ask Addy what her favorite thing about the Center is, she says \u201cI get to play with the basketballs and play outside.\u201d She also loves it when Miss Deb sets up an obstacle course. Her favorite thing is \u201cwalking up and down the ramp.\u201d She says the Center is \u201d the best place to have fun.\u201d<\/p>\n<p>Norah has a harder time picking her favorite thing to do. She says said \u201cI have lots of favorite things!\u201d She is also a big fan of the obstacle course. She said that \u201ccrawling through the tunnel, going up the ramp and jumping\u201d is the best part! She also loves when the volunteers play soccer with her.<\/p>\n\t<div id=\"gap-794025787\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-794025787 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div class=\"img has-hover x md-x lg-x y md-y lg-y\" id=\"image_102533274\">\n\t\t\t\t\t\t\t\t<div class=\"img-inner dark\" >\n\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1020\" height=\"764\" src=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5213-1.jpg\" class=\"attachment-large size-large\" alt=\"\" srcset=\"https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5213-1.jpg 1024w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5213-1-534x400.jpg 534w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5213-1-768x575.jpg 768w, https:\/\/childrenshealing.org\/beta\/wp-content\/uploads\/sites\/8\/2021\/09\/img_5213-1-510x382.jpg 510w\" sizes=\"auto, (max-width: 1020px) 100vw, 1020px\" \/>\t\t\t\t\t\t\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\n<style>\n#image_102533274 {\n  width: 100%;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"text-3594683236\" class=\"text\">\n\t\t\n<p><strong>Lisa and the twins at the hospital.<\/strong><\/p>\n\t\t\n<style>\n#text-3594683236 {\n  font-size: 0.85rem;\n}\n<\/style>\n\t<\/div>\n\t\n\t<div id=\"gap-1565723415\" class=\"gap-element clearfix\" style=\"display:block; height:auto;\">\n\t\t\n<style>\n#gap-1565723415 {\n  padding-top: 30px;\n}\n<\/style>\n\t<\/div>\n\t\n<p>For me, I take joy in watching Addy run around and play with other kids, screaming with delight. When you have a child that can\u2019t fight off germs as well as others, you appreciate having a place like this where kids can just be kids, even if for a short time between doctor\u2019s visits and appointments.<\/p>\n<blockquote><p>\u201cWhen you have a child that can\u2019t fight off germs as well as others, you appreciate having a place like this where kids can just be kids.\u201d<\/p><\/blockquote>\n<p>I am excited for our summer knowing that they can have kid activities and still be safe. They are enrolled for their first week of summer camp next week and they cannot wait!<\/p>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\n\t\n<\/div>\n\t\t<\/div>\n\n\t\t\n<style>\n#section_1687696871 {\n  padding-top: 15px;\n  padding-bottom: 15px;\n}\n<\/style>\n\t<\/section>\n\t\n","protected":false},"excerpt":{"rendered":"<p>Today, my daughter\u2019s physician asked me, \u201cHow do you envision your daughter\u2019s death?\u201d Let that sink in for a minute\u2026.<\/p>\n","protected":false},"author":2,"featured_media":3550,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[71,73],"tags":[],"class_list":["post-3545","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-storybook","category-member-stories"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/posts\/3545","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/comments?post=3545"}],"version-history":[{"count":3,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/posts\/3545\/revisions"}],"predecessor-version":[{"id":3552,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/posts\/3545\/revisions\/3552"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/media\/3550"}],"wp:attachment":[{"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/media?parent=3545"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/categories?post=3545"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/childrenshealing.org\/beta\/wp-json\/wp\/v2\/tags?post=3545"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}