Stand by Nathaniel in His Fight for Life
Donation protected
Our son Nathaniel is 6 months old and was diagnosed with Artemis Deficient Severe Combined Immune Deficiency (SCID) via newborn screening tests. This means he has nearly no immune system function and he is radiosensitive, so he is at a high risk for cancer and severe illness from everyday germs. The only potentially curative treatment options are a Bone Marrow Transplant (BMT) or the Gene Therapy clinical trial. As of right now, it doesn’t seem like Nathaniel will qualify for Gene Therapy and Artemis SCID is the hardest type of SCID to treat with a BMT. To complicate things further, we also don’t have a good match for a transplant.
We currently travel 100 miles one way every 28 days so he can receive IVIG treatments which replace some antibodies his body doesn’t make, and the same trip for separate appointments with his immunology team at Boston Childrens Hospital & the team at the Dana Farber Cancer Institute. IVIG helps replace some of the antibodies his body doesn’t make, which helps protect him from illness & allows us to have him at home with us.
Nathaniel has a very long road ahead of him. We’re currently undergoing lots of testing to try to determine the proper care for Nathaniel to give him the best shot at life, and more so, a HEALTHY life.
Donations will be used to help with the costs of travel, medical equipment, disinfectants, costs of care for his 3 older siblings who cannot travel to his appointments with us, and wages lost from time off work, especially once he is admitted to the hospital for curative treatment. He will need 2 weeks of chemotherapy, a month in the hospital after treatment, and then we must stay within close proximity to the hospital for a month, and if all goes well this will be followed by many months of complete isolation at home until his immune system reconstitutes and we can gradually reintegrate into our new normal.
We appreciate everyone who donates, checks in on us, sends kind words & wishes and helps us along the way as we try to navigate a heartbreaking disease with our baby boy while trying to maintain as much normalcy as possible for our older kids.
Shirts can be ordered from the following link to help support Nathaniel and raise awareness about this rare disease. The store will be open until March 30th.
Organizer
Rebeca Acevedo
Organizer
Mount Tom, MA