{"id":59232,"date":"2021-01-25T14:26:04","date_gmt":"2021-01-25T19:26:04","guid":{"rendered":"https:\/\/rarediseases.org\/olivias-story-in-honor-of-rare-disease-day\/"},"modified":"2021-01-25T14:26:04","modified_gmt":"2021-01-25T19:26:04","slug":"olivias-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/olivias-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Olivia’s Story in Honor of Rare Disease Day"},"content":{"rendered":"

My oldest daughter, Olivia,\u00a0<\/span>was recently<\/span>\u00a0diagnosed with Barakat\u00a0<\/span>s<\/span>yndrome (Gata 3 or HDR syndrome).\u00a0<\/span>Though she is\u00a0<\/span>eleven<\/span>\u00a0now,\u00a0<\/span>w<\/span>e have been battling the kidney disease part since birth\u00a0<\/span>and\u00a0<\/span>hearing loss\u00a0<\/span>since age\u00a0<\/span>five<\/span>. As of now, she does not exhibit <\/span>any\u00a0<\/span>hypoparathyroidism<\/span>\u00a0<\/span>symptoms\u00a0<\/span>yet<\/span>. The biggest\u00a0<\/span>stress\u00a0<\/span>on our family is not knowing how\u00a0<\/span>Barakat will<\/span>\u00a0progress<\/span>\u00a0<\/span>or\u00a0<\/span>what the future might look like for her. We<\/span>\u00a0<\/span>treat each part of her disease separately because not much is\u00a0<\/span>known<\/span>\u00a0<\/span>about\u00a0<\/span>how to\u00a0<\/span>treat<\/span>\u00a0<\/span>it\u00a0<\/span>as a whole<\/span>. We\u00a0<\/span>have discovered<\/span>\u00a0<\/span>that\u00a0<\/span>she has severe learning disabilities<\/span>,<\/span>\u00a0but there\u00a0<\/span>isn’t<\/span>\u00a0enough data to be certain it is because of the disorder. Living life in the unknown\u00a0<\/span>is<\/span>\u00a0our family’s biggest challenge along with keeping Olivia healthy and thriving.<\/span>\u00a0<\/span><\/p>\n

I\u00a0<\/span>believe<\/span>\u00a0talking about these diseases does many things. It brings awareness. It\u00a0<\/span>brings<\/span>\u00a0more data.\u00a0<\/span>I<\/span>t unite<\/span>s<\/span>\u00a0people. As a family of a kid<\/span>\u00a0with a rare genetic disorder, you often feel alone in your battle.<\/span>\u00a0<\/span>Living life not knowing what tomorrow will look like or if there will be a tomorrow is beyond scary and difficult. It is also very lonely as many of us do not know another family going through the same walk<\/span>, but Rare Disease Day gives a platform for families to share their stories.<\/span>\u00a0<\/span><\/p>\n

The 2021 theme for Rare Disease Day being\u00a0<\/span>\u201c<\/span>h<\/span>ealth\u00a0<\/span>e<\/span>quity<\/span>\u201d<\/span>\u00a0<\/span>means\u00a0<\/span>that<\/span>\u00a0there is hope that<\/span>\u00a0<\/span>my child will have the same opportunities for medical care as the next child. It means my child will not be discredited\u00a0<\/span>because she has a pre-existing medical condition that was beyond her control. It means\u00a0<\/span>heightened\u00a0<\/span>awareness and research. It means<\/span>\u00a0we must make<\/span>\u00a0<\/span>health care equity<\/span>\u00a0<\/span>a\u00a0<\/span>priority to help these kids live their best lives.<\/span>\u00a0<\/span><\/p>\n

We live every day showing our stripes. We do many fundraisers for our hospital and are very involved in our community.\u00a0<\/span>O<\/span>n Rare Disease Day and throughout the year, we<\/span>\u00a0will\u00a0<\/span>live every day to the fullest.<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

My oldest daughter, Olivia,\u00a0was recently\u00a0diagnosed with Barakat\u00a0syndrome (Gata 3 or HDR syndrome).\u00a0Though she is\u00a0eleven\u00a0now,\u00a0we have been battling the kidney disease part since birth\u00a0and\u00a0hearing loss\u00a0since age\u00a0five. As of now, she does … <\/p>\n

Continue reading “Olivia’s Story in Honor of Rare Disease Day”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13067,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[505,1827],"tags":[],"class_list":["post-59232","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","category-rare-disease-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59232","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59232"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59232\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13067"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59232"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59232"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59232"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}