{"id":59259,"date":"2021-02-26T19:41:41","date_gmt":"2021-02-27T00:41:41","guid":{"rendered":"https:\/\/rarediseases.org\/jason-and-nolas-story-in-honor-of-rare-disease-day\/"},"modified":"2021-02-26T19:41:41","modified_gmt":"2021-02-27T00:41:41","slug":"jason-and-nolas-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/jason-and-nolas-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Jason and Nola’s Story in Honor of Rare Disease Day"},"content":{"rendered":"

I am the parent of a\u00a0<\/span>four-year-old<\/span>\u00a0girl named Nola. She was diagnosed with distal 18q deletion at the age of\u00a0<\/span>18<\/span>\u00a0<\/span>months. Caring for a child with a rare disease affects every aspect of\u00a0<\/span>daily<\/span>\u00a0life. I find myself having to be more attentive and always “on” when I am with Nola. My career had to be adjusted to allow me to give her the time and attention she needs to thrive.<\/span>\u00a0<\/span><\/p>\n

Rare\u00a0<\/span>D<\/span>isease\u00a0<\/span>D<\/span>ay\u00a0<\/span>is so important because it helps to bring<\/span>\u00a0much-needed<\/span>\u00a0attention to rare diseases<\/span>\u00a0and a platform\u00a0<\/span>to<\/span>\u00a0advocate<\/span>\u00a0for\u00a0<\/span>funding<\/span>\u00a0<\/span>for our children. It also helps to remove the stigma of a child with a rare disease<\/span>\u00a0<\/span>by showing their talents and abilities.<\/span>\u00a0<\/span><\/p>\n

Of the\u00a0<\/span>many\u00a0<\/span>challenges\u00a0patients and caregivers face, I want the public to know<\/span> that we realize some<\/span>\u00a0things take us longer and some things are harder for us to do.<\/span>\u00a0<\/span>Please,\u00a0<\/span>j<\/span>ust be patient. Not only with ou<\/span>r<\/span>\u00a0children<\/span>,<\/span>\u00a0but with us as parents.\u00a0<\/span>But\u00a0<\/span>with\u00a0<\/span>that\u00a0<\/span>being\u00a0<\/span>said, never\u00a0treat us or ou<\/span>r<\/span>\u00a0children\u00a0<\/span>as<\/span>\u00a0any different. We are rare, but we are strong<\/span>.<\/span>\u00a0<\/span><\/p>\n

This year\u00a0<\/span>I will be participating in the New York City\u00a0<\/span>P<\/span>olice\u00a0<\/span>D<\/span>epartment<\/span>\u2019<\/span>s\u00a0<\/span>R<\/span>are\u00a0<\/span>D<\/span>isease\u00a0<\/span>D<\/span>ay event<\/span>. We use our platform and our resources to spread the word on rare diseases. Last year’s event was a great success, and Nola had a great time.<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

I am the parent of a\u00a0four-year-old\u00a0girl named Nola. She was diagnosed with distal 18q deletion at the age of\u00a018\u00a0months. Caring for a child with a rare disease affects every aspect … <\/p>\n

Continue reading “Jason and Nola’s Story in Honor of Rare Disease Day”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13106,"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":[232,192,505,1827],"tags":[2712,2710,2711,219],"class_list":["post-59259","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-patients-members","category-patient-stories","category-rare-disease-day","tag-caregiver","tag-distal-18q-deletion","tag-new-york-city-police-department","tag-rare-disease-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59259","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=59259"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59259\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13106"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59259"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59259"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59259"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}