A couple who were told their severely disabled baby may die within hours of being born are celebrating her first birthday . When Sonia Morales was pregnant , her daughter Angela was diagnosed with anencephaly , a birth defect in which babies are born without parts of their brain and skull . But Sonia and her husband Rony , who live in Providence , Rhode Island , decided to 'keep her no matter what . ' A couple who were told their severely disabled baby may die within hours of being born are celebrating her first birthday . Pictured : Sonia and her husband Rony , with Elizabeth , four , and Angela , now one . Elizabeth with her little sister . Angela has anencephaly , a birth defect in which babies are born without parts of their brain and skull - many newborns with the condition die soon after birth . Angela , who weighs only 16 lbs. , celebrated her first birthday on March 23 alongside their four-year-old daughter Elizabeth . They were prepared that they may lose Angela from the moment she was born . 'When we went to the hospital , I thought I was going to be saying hello and goodbye on the same day , ' says Sonia to People . 'We sang her a song that we made for her . It was during an ultrasound that Sonia Morales was told her daughter was not developing properly . Sonia says her daughter is aware that her little sister is sick , but just wants to spend as much time with her as she can . Everyday the family sing a birthday song , along with a birthday cake and a prayer as they celebrate Angela 's life . After her birth , doctors told the family it was a critical period , but a week later they were thrilled to bring her home . The family have been celebrating every day with Angela since as they know life could be short for their sick daughter - they have a birthday cake and sing every day . 'Every day is truly a gift . She knows how much she is loved , ' Sonia says . Anencephaly occurs between the third and fourth weeks of pregnancy . During that time , the neural tube is supposed to close and fold over to form the brain and spinal cord of the fetus . This process fails to occur in anencephalic pregnancies , resulting in the absence of a large portion of the brain , skull and scalp . Babies born with anencephaly are usually blind , deaf , unconcious and unable to feel pain . They are usually stillborn but in rare cases they may survive longer . The rate of anencephaly is one or two per 10,000 births . Sonia says her other daughter is aware that her little sister is sick . She wrote on a Facebook post : 'From the beginning we tried to explain that her baby sister would have to go to Heaven with Jesus because her head was not fully formed . She took it in a very natural way . 'Eli was always there close to help me with her sister . Rony and I , did not want her to see Angela 's head without the hat that covered the hole in her head . 'But one day I did not locked the door when I was doing Angelas 's dressings and I was washing her wound . Elizabeth 's first reaction is priceless , `` Mami she has hair , she is beautiful ! '' 'Elizabeth did n't see Angela 's deformity she saw her sister , she saw her beauty . 'And from that day she was the one who helped me clean the opening . 'Passing me the gloves , tape and bandages . She told me , Angela is different from other children but who cares mommy she is beautiful God made her like this . ' Angela has part of her brain missing and one of her eyes is shut , but she has made progress in the past year . Sonia posted a video online which shows her moving her head as she calls her voice and she recognizes those familiar to her . Although her future is still uncertain the family are making the most of their time with her and take her on family outings . The Morales have created a GoFundMe page to help with medical expenses . They have also made a Facebook page which offers updates on Angela 's health as well as offering support to other families whose children have anencephaly . Sonia wrote on the Facebook page : ' I am a happy mom . She gives us so much joy to our family . ' Although her future is still uncertain the family are making the most of their time with her and take her on family outings .
When Sonia Morales was pregnant , her daughter Angela was diagnosed with anencephaly . It is a birth defect in which babies are born without parts of their brain and skull - many newborns with the condition die soon after birth . Angela celebrated her first birthday on every day . The family are celebrating March 23 they have with Angela .