(Family photo taken the morning James was to be admitted to the hospital)
As many of you may know, my brother, Greg Porter, and sister-in-law, Juliana Geller, had their first child on July 18, 2017; A handsome little boy named James Anthony Marques Porter. Shortly after James was born, Greg and Juliana received some devestating news. James was born with a condition called X-Linked Severe Combined Immunodeficiency (SCID), which is a genetic mutation of the IL2RG gene. Most people would recognize this disorder as the "Bubble Boy" disease.
What this means is that James is at a very high risk of life threatening complications from catching bacterial and/or viral infections, due to his immune system's inability to fight off the infection. If left untreated, children with this condition do not survive past the age of 2.
Luckily, 48 out of the 50 states now currently test for this condition through newborn screening tests. Because of these tests, James' condition was caught very early and Greg and Juliana have been able to keep him in isolation, away from the world and the diseases that live within it. Unfortunately, this also means that Greg and Juliana have been mostly isolated at home, as well. There are no family outings. There are no play dates. There are no family, friends, or visitors of any kind. The only time James leaves the house is to go to his numerous doctor's appointments.
The best chance James has at survival is a bone marrow transplant before 4 months of age. We all feel incredibly blessed that James has not one but two 100% HLA bone marrow matches.
James will be admitted to the Children's National Medical Center in Washington, DC on Sunday, November 12th, to start the long road to recovery. He will have surgery to install a central line to start chemotherapy, which is intended to destroy any immune system that he may have. On November 21st, he will have his bone marrow transplant. James will be in the hospital for 6-8 weeks while he recovers and will be cared for by Greg and Juliana, who are required to live at the hospital for the duration of this time. After James is released from the hospital, he will need to remain in isolation. The minimum isolation is 100 days from the date of bone marrow transplant.
Juliana has been out of work since James was born and Greg will be at the hospital on Tuesdays and Thursdays while James is in the hospital. Once Juliana goes back to work in January, Greg will be taking unpaid leave from work. As you can imagine, the financial strain has been and will continue to be a burden.
My family and I are setting up this fundraiser to help Greg and Juliana care for James and provide a safe environment for when he returns home. Any donations received will go towards medical co-pays, any portion of the medical bills not covered by insurance, living expenses while they are out of work (rent & bills), food while they are at the hospital, formula, diapers and cleaning products for when James is home from the hospital.
Greg and Juliana will be providing updates on James' condition at the following website and have also put together an Amazon wishlist of items they will need during their hospital stay, if you would prefer this method of donation instead.
Please feel free to leave messages of love, prayers and well wishes. We truly appreciate everyone for their love and support during this difficult time!
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