Ocean Springs newborn receives life-changing transfusion
New parents in Ocean Springs, Hali Saylor and Joseph Delia, have experienced pure bliss since the birth of their baby boy in May but they have also felt sadness and hopelessness.
Early on, these two learned there isn’t anything they wouldn’t do when it comes to the life of their child.
Joseph Crew Delia entered the world a health baby boy on May 6th to elated parents Hali Saylor and Joseph Delia.
Twelve days later, Crew’s mom and dad received a phone call, telling them their newborn tested positive for spinal muscular atrophy. “He was a perfectly healthy boy. Eight pounds, eight ounces, chunky little man. That’s why we were so shocked at the newborn results because we were like he is so healthy.”
Spinal muscular atrophy is a rare genetic neuromuscular disease that slowly kills motor nerve cells in the body and impacts the muscles used for activities such as sitting, standing, walking, breathing, and swallowing.
Saylor and Delia were determined to help their son with a one-time IV infusion called Zolgensma that could help him reach development milestones, but the infusion came with a $2.1 million price tag.
Because insurance would only pay $500,000 towards the cost of the infusion, the parents, family, friends and complete strangers rallied together to raise the rest of the money through a GoFundMe and in less than two weeks, nearly $70,000 was donated. On June 16th, Crew received the life-altering transfusion. “It’s just amazing at the amount of people that came out, complete strangers who are willing to donate and help his cause, help our little man here.”
Now, Saylor and Delia are looking forward to a bright future with their little man. “In the future, he is going to look back and be so humbled that the community cared enough to help him.”