Evalise Romero
Evalise full story!
A child is a blessing, pregnancy is supposed to be a happy time. At 5 months into the pregnancy we received news that showed Evalise intestines were outside of her belly. The doctors did not go in at that time even though they should have. Instead at the time of labor I was rushed to have a C-section. My baby was taken away and rushed into surgery the minute she was born. Waking up from medication, I was given the news no mother should ever have to receive. The doctor was apologizing that my little angel's intestines had lost blood supply and were no longer able to be put back inside. They had died and had to all be removed she was left with 20cm.
Seeing your child for the first time with the same scar as you going across her belly was painful but that was only the beginning of the road ahead.
7 months in the NICU seemed like an eternity! Everyday just hoping to take our baby home, she was already able to sit on her own and we were still in the hospital hoping that she would get better and she could finally be home with us. Finally after being discharged we found our way back in the hospital from El Paso to San Antonio to Ohio. Surgery after surgery, speech therapy, home health care IV after IV, line after line was put into her. She suffered from constant diarrhea, vomiting and never ending belly ache. She would beg me “mommy please take my pain away, please make it stop!” I felt hopeless there was nothing I could do to help my baby girl.
Evalise my little miracle baby doesn’t fully understand why she has tubes in her stomach and chest. She doesn’t understand why her parents have to hold her down so the nurses can do what’s best for her every hospital stay; she thinks they just want to hurt her. She doesn’t know why she gets made fun of at school for being different or why she is so hungry and eats and then has to deal with pain. She loves food yet food is her enemy she can’t gain weight or nutrients from it. Her belly stays so big from her distended short intestine the only one she was left with. Now at 8 yrs old she is only 30lbs very malnourished. Her rectum is burned out from 8yrs of not being able to form a stool. Still in pain from her belly she eats because she is hungry but it causes pain and infections because her food has nowhere to go. Her condition is so rare there are no options for her. Drugs are still being tested; transplants are very new and still dangerous. As of June 8th Evalise ran out of IV access from having so much in her short life spam. Everything has been used up from her neck, legs, feet, hands, arms, chest, and even on a shaved head. She needed to be taken to a center that knew more about her condition and works more with kids that have a similar condition. In El Paso we couldn’t find that kind of care anymore, we had to bring her back to Cincinnati Children’s Hospital where she had been before as an infant, to get the care she needs.
Evalise is definitely a fighter! Our hero who still smiles no matter what life has thrown her way. Hospitals have become her home, but she misses her home with her family, friends and her puppy (her best friend) very much. Currently she is getting nourished and drugs are being tested in hopes something will work. Or expenses are excessive the insurance only covers a small % for medical cost, traveling back and forth 1,567miles from home having to pay for flight costs to still try and maintain our jobs. We are in need of your donations to assist so we can focus on our little girl. Money shouldn’t stop from trying to do all that you can for your child, it’s unfortunate it has to be a burden on the family who is trying to stay by her side. Any donations will be a big help no amount is too small.
This link is of the story that a local news station did about Evalise..This little angel deserves a chance to live!! ❤
https://m.facebook.com/story.php?story_fbid=823933081078403&id=326396687498714
