We are walking on behalf of our brave and remarkable little warrior, Ayrton Kenji. Ayrton just turned 15 months old on June 3rd and thriving since coming home in February after spending the first 333 days of life inpatient in the NICU and MSICU at Boston Children’s Hospital.
Ayrton has what is called a giant "omphalocele", a rare abdominal wall defect where organs (liver, stomach, intestines) from the abdominal form outside in the umbilical cord, and is often associated with other birth defects. His fight began at 12week gestation when we learned of this scary and heart breaking new word. Thankfully, genetics testing cleared him of any chromosomal abnormalities.
In addition to his omphalocele diagnosis, Ayrton also has chronic lung disease and pulmonary hypoplasia, which requires him to be on 24/7 ventilation and oxygen. This added another layer of complications and countless days of uncertainties, heartaches and close calls the first 10 months.
Ayrton endured things that no baby should ever have to endure, but he never stops fighting, never stops conquering. Today, Ayrton is hitting all developmental milestones, learning how to walk and communicate through signing. He loves to dance an read, giving isses and being silly. He could not be where he is today without the exceptional care, expertise and support of the wonderful team of doctors, nurses, therapists and staff at BCH. We are so thankful to be able to celebrate his first birthday at home and simply to be able to let him experience normal day life and activities at home.
Ayrton's surgery is scheduled for July. The fight continues... until then, we're doing our very best to keep him healthy and strong!
Ayrton taught me what it means to be brave and strong. I'm so proud and blessed to be his mom.
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