Campaign Story

My name is Jyssika. I had my son Sebastian on 9/18/2020 2 months early vía c section. On the 4th day of life I got a call that my son’s California newborn screening was flagged by the state as abnormal. We were flown to ucla where is was confirmed that he had SCIDS also known as bubbly boy disease. He was born without an immune system. After gene sequencing it turns out he had a rarer form of this condition known as Artemis SCID. We were flown to ucsf to undergo a trial of gene therapy. We were hospitalized for 10 months and during those months he suffered seizures and strokes due to the picc line and port. Being in the hospital was emotionally, physically, and financially draining. And being during COVID was worse as only one parent can be with baby a day. After gene therapy he’s still on isolation as his immune system is still trying to grow but there’s a chance we have to repeat the treatment this year. We want to grow our family but turns out my significant other and I have the mutation of the Artemis gene, and hence it’s 100% guaranteed we will have another bubble baby. And I cannot go through that again. We need to go through ivf and preimplantation genetic embryo testing to have a healthy baby. And it can get costly if my insurance decides not to pay, even when Sebastians medical bills reached 2.5 million . If you can please support our journey in growing our family.