Nov 12, 2017 Latest post:
May 11, 2018
Welcome to James' CaringBridge website. This journal was set up for Juliana (Geller) and Greg Porter to keep family and friends updated in one place. Your support, words of hope, and encouragement are greatly appreciated as the Porters go through this difficult time in their lives.
Juliana and Greg welcomed their beautiful baby boy James into the world this summer. He is sweet, cuddly, and a real pro at snapchat thanks to his momma! Shortly after his birth, we learned James has X-Linked Severe Combined Immunodeficiency (or SCID). This means that he cannot fight off your everyday virus or diseases, and without treatment would succumb to the disease. Since James was around 10 days old, he has been isolated from the outside world. Through this isolation, he has avoided being exposed to any outside germs and viruses, and is currently healthy. After months of testing and preparation, he is about to undergo a bone marrow transplant with chemotherapy, in order to reboot his immune system. If all goes as planned, in a few months, he will be cured and will have the ability to see the world for the first time. Through the National Bone Marrow Registry James has found a 100% matching donor. The stem cells from this donor will be transplanted at Children's National Medical Center, in Washington, DC on November 21st. James will be admitted to the hospital on Nov. 12th. Chemotherapy will start shortly thereafter, and he will likely be in the hospital for a minimum of 6-8 weeks. Follow up care will occur through the next year until his little immune system starts to regenerate.
I hope we can use this site for Juju and Greg to send updates, family and friends to leave messages, and to help the family anyway we can!
In addition to emotional support, we've set up other ways to help out. Click on "Ways to Help Out" and then under "Support Links", you'll find an Amazon wish list, which includes household needs, groceries, items for James and hospital needs, as well as a link to MealTrain where you can volunteer to bring dinner or donate money to the family. If you wish to donate money do not donate on the CaringBridge site itself but instead use the links in the "Ways to Help Out".
Thank You, -Paige
Greg & Juliana's note to visitors:
Thank you everyone for visiting our site, and to our friend Paige for setting this up for us. We wanted to provide some color surrounding our journey now and in the upcoming months.
As she mentioned, James has been diagnosed with SCID (or) X-Linked Severe Combined Immunodeficiency (Mutation of the IL2RG Gene). You may better know this as 'bubble boy disease'. This disease can be caused by a random genetic mutation, or passed on through a parent's X-Chromosome which has this mutated gene. We are awaiting genetic testing to see what the official cause may be, so that we know how best to inform any extended family that could also someday be affected by the condition. Currently 48 states in the US screen for this disease as part of the Newborn Screening heel prick test, which is how we found out about his condition. In the past, parents would not find out that their child had this disease until their child was around 6 months old, and had an illness that they did not recover from.
Taking the doctor's advice, we made the decision to keep James isolated with his momma at home since he was about 10 days old. This was the best approach to protect him until we decided on which was the right treatment option for him. Currently he is at 100% health and will go into treatment with the best chances for recovery. Without treatment, children do not have a chance of survival beyond 2 years of age.
An interesting and often overlooked aspect of the disease is that it not only isolated the patient, but also the parents. Because of his condition, James cannot go outside, cannot go to daycare, or be around other people without special precautions (Masks, gloves, gowns, etc...) This is especially tricky with Dad, who comes and goes from work. Special precautions and procedures must be followed each day to prevent James from being exposed to anything that could be harmful.
Mom will be continuing care for James through middle of January, taking up the remaining FMLA time without pay.
Dad will take over primary care of James when mom goes back to work until we find a solution for his care, so both parents are able to work.
His critical period will be 100 days from his Bone Marrow Transplant, as his system should have regenerated the cells he needs to have a healthy enough immune system to venture out into the world for the first time (on limited basis). He will continue to be monitored throughout the next year and have follow ups yearly.
We cannot wait for that day to come when he will be able to take his first walk outside, touch the grass, and meet his family and friends that are so anxious to meet him. Our family is so very grateful for your support. It means the world to us.
Please keep our family in your thought and prayers. -Juliana & Greg