Elias's Medical Expenses

On March 6th, 2018 the light of our lives entered our world. Our sweet boy, Elias was born 6 weeks premature at Cohen children's hospital. At birth, he was having breathing issues and some of his vital organs were in failure, unable to eat and breathe on his own he was placed on a mechanical ventilator and under specialized care in the NICU for 30 days. After two weeks of intensive care and many doctors working on him, he was diagnosed with generalized arterial calcification of infancy (GACI )ABCC6 ENNP1. An extremely rare gene and chromosome disorder, with roughly only about 200 known cases. Our little fighter was able to get discharged home, eventually needing surgery to place a Broviac device that allowed him to receive needed intravenous infusions to treat his GACI diagnosis.
         On April 20, 2019 he went for his annual checkup and the calcium had vanished from his arteries, we all celebrated because it was truly a miracle. To see our little warrior respond to treatment was a testament of his strength at such a young age. Two days later, they removed the Broviac. Elias was finally living like a normal kid. Although he still required frequent appointments for monitoring, he was able to do the things he couldn't do before, play, run, go anywhere, take showers and baths (which he loves).
         On February 13, 2020 he was rushed to the hospital after raising concerns. Elias would touch his chest and say “hurts, hurts” to his mother, his mom would feel his heart beating fast just by lightly touching his chest. After extensive examination, Elias was diagnosed with Pulmonary Hypertension, a lung biopsy revealed calcium buildup in his lungs. Our hearts were broken when they told us he needed a surgery to put the Broviac back and he would need to start infusions of medicine everyday again. He began throwing up every day after each infusion. His doctor prescribed nausea medication and an intravenous solution to be given during his infusions. But Elias just kept feeling worse and during his appointment on December 1st, 2020 he was taken to the emergency room because his oxygen levels were dangerously low. He was stabilized and released.
         On December 3rd, he became very sick after his infusion, showing clear signs of difficulty breathing and a seizure. He was taken to Wycoff hospital, where he was placed on a mechanical ventilator and later transferred to Cohen children's hospital where it was determined that he was in pulmonary hypertension crisis. His circulatory system was struggling, the assistance of a mechanical ventilator wasn’t enough and he needed emergency surgery. Elias was placed on Extracorporeal membrane oxygenation (ECMO) which does the work of heart and lungs. Since he was born, Elias has been treated at both Cohen Children's Hospital and the Children's Hospital of Philadelphia (CHOP), where GACI experts are located. On December 9, 2020, Elias was transported to CHOP and has been there since.
As the family of Elias we are asking for your help. His parents cannot do this on their own. We just want to lighten the financial burden for his parents so they can focus on being there with their son.
At only 2 years and 11 months Elias has faced many battles and has been victorious, he’s undergone 7 surgeries, five of which were major ones including an open heart surgery. He is a strong, funny, loving, smart, and resilient little boy that can make anyone fall in love with him. Elias has a long road ahead of him but we know he can make it through this. We just ask for your help, whether it is in prayers or any monetary amount you can give. It is all greatly appreciated.