SAN ANTONIO, Tx \u2014 New parents expect to celebrate the birth of their baby. They never prepare to handle a rare diagnosis. But that\u2019s what happened to a family from McAllen.<\/p>\n
Derek Callaway and Michelle Cruz\u2019s daughter Presley Callaway was only 4 months old when she was diagnosed with an extremely rare and terminal brain condition called pontocerebellar hypoplasia type 6. It affects her cerebellum and brain stem.<\/p>\n
Her parents say they have lost their home as they\u2019ve traveled in search of the best doctors, including here in San Antonio hoping for answers.<\/p>\n
Presley has been treated at 7 hospitals in her short life.<\/p>\n
\u201cWe\u2019ve confirmed that she is the only case in Texas and is the 32nd in the world,\u201d Derek Callaway said.<\/p>\n
Presley\u2019s parents are hoping for a miracle at University Hospital where she is currently admitted. The two-year old is blind, non-verbal, dependent on oxygen and feeding tubes, unable to walk and has non-stop seizures due to her brain diagnosis.<\/p>\n
Her father and mother say their daughter still has a will to live.<\/p>\n
\u201cWhat they tried to tell us at first is that she wouldn\u2019t make it to 6 months old,\u201d Derek Callaway said. \u201cToday she\u2019s 2 and a half. So, what they think we don\u2019t agree with and we continue to fight.\u201d<\/p>\n
They say Presley has been hospitalized 33 times in her young life. Her parents have traveled to Texas, Tennessee, and contacted professors who have dealt with PCH in New York, Russia, and Germany but no one knows how to treat their daughter. They continue to search for answers.<\/p>\n
\u201cThe oh yeah, I\u2019ve seen this case before,\u201d Derek Callaway said. \u201cI\u2019ve dealt with something like this before. Let\u2019s try this medication.\u201d<\/p>\n
Dr. Gustavo Charria-Ortiz at Christus Children\u2019s has treated Presley since she was an infant. The pediatric epileptologist says the brain is supposed to grow 90 percent of its final size in the first 2 to 3 years of life.<\/p>\n
\u201cUnfortunately, in patients like Presley that\u2019s not the case,\u201d Dr. Charria-Ortiz said. \u201cHer brain is asking for fuel, and she cannot provide it. We try to see her at least once a month in our clinic. But let me tell you her parents are so dedicated to her. It\u2019s something to admire.\u201d<\/p>\n
Presley\u2019s parents are praying for a miracle. They are asking any doctor who may know how to help prolong their daughter\u2019s life to contact them at 325-642-8729.<\/p>\n","protected":false},"excerpt":{"rendered":"SAN ANTONIO, Tx \u2014 New parents expect to celebrate the birth of their baby. They never prepare to…\n","protected":false},"author":3,"featured_media":423522,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5133],"tags":[5229,7202,7203,358,3187,67,586,132,5230,68,2969],"class_list":{"0":"post-423521","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-san-antonio","8":"tag-america","9":"tag-san-antonio","10":"tag-sanantonio","11":"tag-texas","12":"tag-tx","13":"tag-united-states","14":"tag-united-states-of-america","15":"tag-unitedstates","16":"tag-unitedstatesofamerica","17":"tag-us","18":"tag-usa"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/115659874383785056","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/423521","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=423521"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/423521\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/423522"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=423521"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=423521"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=423521"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}