{"id":59258,"date":"2021-02-26T19:31:48","date_gmt":"2021-02-27T00:31:48","guid":{"rendered":"https:\/\/rarediseases.org\/valencia-bellas-story-in-honor-of-rare-disease-day\/"},"modified":"2021-02-26T19:31:48","modified_gmt":"2021-02-27T00:31:48","slug":"valencia-bellas-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/valencia-bellas-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Valencia Bella\u2019s Story in Honor of Rare Disease Day"},"content":{"rendered":"

Our brave beauty’s name is Valencia Bella<\/span>. T<\/span>ogether<\/span>,<\/span>\u00a0her father and I raise her to be strong and courageous. She was born with\u00a0<\/span>a<\/span>mniotic\u00a0<\/span>b<\/span>and\u00a0<\/span>s<\/span>yndrome where the cords were wrapped around her legs so tight<\/span>\u00a0that\u00a0<\/span>it caused extensive nerve damage and near amputation. We have been blessed enough that she was able to keep her legs, but she is not able to walk or stand for\u00a0<\/span>exceptionally\u00a0<\/span>long<\/span>\u00a0periods<\/span>\u00a0of time. Through therapy and her amazing team of physicians<\/span>,<\/span>\u00a0we have been able to\u00a0<\/span>somewhat\u00a0<\/span>increase\u00a0<\/span>movement<\/span>, and s<\/span>he wears AFO’s and uses a wheelchair<\/span>.\u00a0<\/span>She undergoes surgeries, procedures and therapy with a smile and pleasant attitude<\/span>.<\/span>\u00a0<\/span>\u00a0She is walking and rolling through life with a positive attitude and an even bigger impact on all of those she meets.<\/span>\u00a0<\/span><\/p>\n

Rare Disease Day is important to us as a family because we can bring awareness to this incredible birth condition\u00a0<\/span>in which\u00a0<\/span>the cause\u00a0<\/span>remains<\/span>\u00a0unknown. This day allows us to celebrate\u00a0<\/span>Valencia Bella\u00a0<\/span>more than usual because living with a rare disease is just as important as being treated for one.<\/span>\u00a0<\/span><\/p>\n

Living with a rare disease and caring for a loved one with a rare disease present many day-to-day challenges<\/span>\u00a0<\/span>regarding<\/span>\u00a0actions<\/span>\u00a0that most take for granted.\u00a0<\/span>For example, r<\/span>unning to the store<\/span>\u00a0take<\/span>s<\/span>\u00a0a “typical” family 10 minutes to be in and out,\u00a0<\/span>whereas<\/span>\u00a0a child with a rare disease requires equipment and time to be able to move freely throughout the store. It will take us twice as long to make a quick run to the store. Rare diseases also create a constant barrage of doctor visits, therapy visits, and an ever-changing\u00a0<\/span>timeline<\/span>\u00a0of\u00a0<\/span>possible conditions<\/span>\u00a0that c<\/span>ould\u00a0<\/span>present themselves as we learn more about our rare\u00a0<\/span>disease’s<\/span>\u00a0symptoms. There is a lot to learn about rare diseases<\/span>,<\/span>\u00a0even for the families living with them.<\/span>\u00a0<\/span><\/p>\n

Equity in health means fairness and openness in treatment of condition<\/span>s<\/span>. It means getting what is needed for your disease<\/span>,<\/span>\u00a0even if\u00a0<\/span>it’s<\/span>\u00a0not the so-called norm. It means having an understanding that this disease is a change in movement<\/span>,<\/span>\u00a0not a loss of vitality. Rare diseases change our lives and how we do\u00a0<\/span>things,<\/span>\u00a0but\u00a0<\/span>they don\u2019t<\/span>\u00a0not<\/span>\u00a0take away our willingness to push past barriers and reach new limits both through research and throughout life. Health equity means never having to accept the lesser version for your life because you\u00a0<\/span>require<\/span>\u00a0more accommodations.<\/span>\u00a0<\/span><\/p>\n

As a family<\/span>,<\/span>\u00a0we plan to bring awareness to Rare Disease Day by writing about it on our blog, wearing our stripes bold and proud, and celebrating the life that is our brave beauty for all that she is and all that she will be.<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Our brave beauty’s name is Valencia Bella. Together,\u00a0her father and I raise her to be strong and courageous. She was born with\u00a0amniotic\u00a0band\u00a0syndrome where the cords were wrapped around her legs … <\/p>\n

Continue reading “Valencia Bella\u2019s Story in Honor of Rare Disease Day”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13104,"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":[192,505,1827],"tags":[2709,2645,219,228],"class_list":["post-59258","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","category-rare-disease-day","tag-amniotic-band-syndrome","tag-health-equity","tag-rare-disease-day","tag-rare-diseases"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59258","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=59258"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59258\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13104"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59258"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59258"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59258"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}