{"id":58579,"date":"2015-06-18T18:54:41","date_gmt":"2015-06-18T22:54:41","guid":{"rendered":"https:\/\/rarediseases.org\/the-fight-for-a-cure-for-duchenne\/"},"modified":"2015-06-18T18:54:41","modified_gmt":"2015-06-18T22:54:41","slug":"the-fight-for-a-cure-for-duchenne","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/the-fight-for-a-cure-for-duchenne\/","title":{"rendered":"The Fight for a Cure for Duchenne"},"content":{"rendered":"

When Robert and Theresa Capolongo were preparing to be parents, many words were thrown around by their friends and family about the joys of having children. \u201cFulfilling.\u201d \u201cLife-changing.\u201d \u201cBeautiful.\u201d These were, of course, balanced with considerate pieces of advice. \u201cIt\u2019s the toughest job out there.\u201d \u201cIt\u2019s not about you anymore, it\u2019s about them.\u201d\u00a0<\/strong><\/p>\n

All of the above turned-out to be true when the Capolongos welcomed their son, Michael, into their lives. But Robert and Theresa have been colored with the kind of wisdom only families touched by a rare disease could ever understand: what it means to fight every day for your own child\u2019s life.<\/p>\n

At four-years-old Michael was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a 100% fatal, genetic disorder that affects 1 in 3,500 boys and 10,000 to 15,000 people in the U.S. This terrifying degenerative disease takes the lives of boys by their 20\u2019s by inhibiting dystrophin, a protein that is essential for muscle cells to survive.<\/p>\n

\"\"Michael, who just recently celebrated his 9th birthday this May, has been forced to learn mature lessons that\u00a0 go well beyond his times tables and ABCs. He\u2019s learned that if he doesn\u2019t do his stretches every evening, he\u2019ll wake-up with terribly tight legs the next morning. He\u2019s learned to avoid staircases in fear that they\u2019ll damage his muscle cells. He has also learned that the time he spends with his parents and siblings, Victoria Rose and Bobby, are what get him through these pains.<\/p>\n

His parents are also adapting to a new world, one where they are compelled to travel to pediatric hospitals outside of their home state. They look into alternative therapies and miss work to attend the latest Duchenne research conferences and conventions. Their friends and family were right: it\u2019s not about you anymore, it\u2019s about them.<\/strong><\/p>\n

Robert, an NYPD Sergeant, and Theresa, a nurse in the Neonatal Intensive Care Unit at Staten Island University Hospital, have dedicated their lives to protecting and providing for their local New York community. Now, they are the ones in need of support.<\/p>\n

That\u2019s why together, they founded Michael\u2019s Cause, a non-profit that raises awareness for Duchenne and directs funds to research for new treatments and a possible cure. Through these efforts, Michael has become more than his disease.<\/strong> He is helping his parents further Duchenne research so that he and the thousands of boys affected by this disease can live fuller and longer lives.<\/p>\n

\"\"<\/a><\/p>\n

Robert and Theresa hold onto a truth that any parent sharing their fight knows: that by having Michael, a child with a rare disease, they gave birth to hope. Through Michael\u2019s Cause, the Capolongos aim, every day, to give researchers and academia the fuel they need to change the course of this rare disease for good.<\/p>\n

For more information on the Capolongos and Michael\u2019s Cause, or to donate, please visit https:\/\/www.michaelscause.org\/ and follow on Twitter @MichaelsCause1, Facebook at Michael\u2019s Cause and on crowdrise at https:\/\/www.crowdrise.com\/michaelscause.<\/p>\n

 <\/p>\n

 <\/p>\n

Michael’s story was provided by the\u00a0Capolongos family. NORD is happy to support them \u00a0by sharing their story on this website.\u00a0<\/em><\/p>\n

If you would like to share your rare story, please visit rarediseases.org\/patient-stories and fill out the form provided!\u00a0<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Michael’s family knew life would change after having children, but they could never predict how much.<\/p>\n","protected":false},"author":1,"featured_media":11848,"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],"tags":[286,590],"class_list":["post-58579","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","tag-duchenne-muscular-dystrophy","tag-michaels-cause"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58579","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=58579"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58579\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11848"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58579"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58579"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58579"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}