On April 5, 2[phone redacted] Medardo Leonardo Arias was born at 6lb 12oz and 19in. This is just the beginning of his story. He did not have the suck reflex right away when he was born and he had to be syringe fed. Slowly he worked with a pacifier and he was slowly drinking from a bottle before we went home. At home he was syringe fed and bottle fed depending on what he can do at that moment. His pediatrician didn't seem to greatly concerned but recommended him to occupational therapy for an uncoordinated suck. So of course I didn't read to much into it and figured he would work on it and get better. I never in a million years would have expected what followed. On April 27, 2017 he became lethargic and I took him to urgent care which then called children's mercy hospital transport to come get him. He ended up having rhino entero virus. He fought like hell to get through that first night. And then they next day he was alert and found his tongue and was playing around. April 30 he was discharged. He progressively started getting worse and kept vomitting. On May 9, 2017 I took him to children's mercy emergency because he had a fever by the time I got there his breathing was labored and the team was on him fast. They ordered a CT scan to check for infection because they didn't want to put him through yet another spinal tap. What they were initially looking for was good but what they noticed was certain parts of his brain didn't develop. I was devastated. They admitted him into the NICU and proceeded a full work up. Everyday there was more and more concerns found. The diagnosis of his brain are agensis of corpus callosum and congenital pontocerebellar hypoplasia. He had also been diagnosed with microcephaly, congenital cataracts, failure to thrive, neonatal hypotonia, cardiomyopathy and more. They also felt he wasn't safely swallowing and protecting his airway so they began to feed him through a NG tube. On June 15, 2017 he was well enough to get a G-tube surgery. They also wrapped the top portion of his stomach to prevent him from vomitting because that also became a huge concern. They had suspected a rare disorder called vici syndrome within the first few weeks of his stay. The doctor then informed that the prognosis typically doesn't look good for these children and they don't end up living long. On June 23, 2017 the last of 3 genetic labs came back confirming the diagnosis of vici syndrome. On June 26, 2017 Medardo was finally able to come home! He has 10 appointments scheduled for different clinics. He will have to follow several specialists. Because of the intense care Medardo needs I will not be able to return to work from maternity leave. A nurse practitioner gave me wonderful advise and said love your babies, all we can do is love our babies while we have them because no one is guaranteed a certain amount of time. Medardo is not giving up and continues to fight. Just because there is a diagnosis doesn't mean giving up and accepting what they are saying your child is going to be like. He acts just as a baby should and it's not a race to see who reaches their milestones first. It's just a matter of reaching those goals one step at a time and I will be by my sons side helping him in every way possible. Having a special needs child is truly a blessing in it's self. When neurology first came to talk to me about his brain they said that this is just the way his storybook was written. Medardo is precious and beautiful and I am so lucky to get to be his mommy! As they kept filling me with different news,which seemed to be daily at the beginning, I became stronger and stronger. I knew that I was going to have to be strong and I couldn't let my son feel any negative emotions. I wanted him to feel how much I love him and how proud I am of him!
- Madison Paige
Organizer and beneficiary
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