SCID Angels published its first quarterly newsletter in January 2023. Since then we’ve highlighted a variety of SCID patients and families from both the US and Canada. For our final edition, we thought you might enjoy an update on some of these individuals and families.
From Heather, mom to Taylor (Adult XSCID):
Taylor is now 5 1/2 years post gene therapy, and all his numbers look good. He remains off of IVIG and takes no medication. He has a great job and is living in Texas with his Fiancé, Emily. They are planning a spring wedding.
From Haylie (Adult ZAP70 SCID):
Since we last connected, our family has grown! Mia Nadine was born in August and is perfectly healthy. Jax is now 13 months old, and Mia is 3 months—our little Irish twins! I’m beyond grateful to have two healthy children, especially after everything I went through with SCID and chemotherapy. We also received the wonderful news that my husband is not a carrier of ZAP-70 SCID. While this means our children will still be carriers, this news has been a blessing and a huge relief. My hope is that my story can offer encouragement and hope to others in the community. God is so good, and His plan is always perfect.
From Shayla, mom to Seersha (ADA SCID):
It’s been 18 months since Seersha had her transplant, and she’s been thriving. She has gotten sick a few times since, and battled them all by herself, even though that was terrifying. She’s now in first grade, but still homeschooling, and just received her very first vaccine. She’s more than ready to attend school, dodger games, and play sports. Skylar and James are both doing well in school and enjoying multiple sports. My husband and I are expecting baby number 4. All of our children are excited, especially Seersha to be a big sister. Although we are apprehensive about the potential of another SCID child, we’re ecstatic about adding to our family. We are set to leave California in the coming year, which is a big accomplishment for us, since we moved here for Seersha’s treatment. We’ve been given an all-clear to do her post-care elsewhere. This year was definitely a year of firsts for Seersha, and we couldn’t be more grateful for how far she’s come.
From Jenna, mom to Deklan (RAG1), Everly (donor to Aubrey), Weston (RAG1 and Omenn Syndrome), and Aubrey (RAG1 and Omenn Syndrome):
Life has been extremely busy lately. Days that were once filled with stressful medical appointments, keeping track of medications/infusion supplies, and caring for central lines have been replaced with the busyness of “normal” life. This includes the boring stuff like crying toddlers and cooking/cleaning but also includes really fun and amazing things like trips to the zoo, visits to germ-filled children’s museums that would have given me anxiety years ago and most exciting…building a house!! So, life has been very good for our family overall. We are really grateful for that after years of stress and struggle.
Medically speaking, things are going great for my 3 SCID kids as well! Here is a little update for everyone:
Deklan started middle school this year. The transition has been hard for him, but he is working hard to keep his grades up. He still receives subcutaneous IgG once a week, but other than that doesn’t need any other medications. His white counts aren’t very high but remain stable every year at his annual follow-ups. Recently, I noticed that the whites of his eyes were a bit yellow. This, as well as his blood work showing elevated bilirubin for several years, made his doctor suspect Gilbert Syndrome. We did a genetic test, and he is a carrier. Thankfully, it is not anything to worry about. Just something to be aware of so we don’t panic if he looks a little jaundiced every now and then.
Weston turns 4 in just a few weeks! He is our healthiest child in regard to height/weight, which is funny because he is our pickiest eater. His T cell levels are within the normal range and he has a small number of B cells as well! He hasn’t received IVIG in a year and a half and his IgG levels were the highest they have ever been at his last appointment! He has received all killed vaccines, and we will be checking titers in January to see if his B cells are able to mount an appropriate response. If they do, we will move on to live vaccines. This is scary but exciting! We are so hopeful he will not need to do lifelong IgG infusions. His only issue is that his BMT workup last March showed hyperthyroidism. He has been seen by an endocrinologist, and thankfully his levels have normalized, but he still has thyroid antibodies which means we aren’t out of the woods yet. He will be tested regularly to make sure everything is ok, otherwise, he would need to be put on medication to help manage it. Developmentally, he is a bit behind in speech. He receives weekly speech and occupational therapy and has been working hard to catch up.
Aubrey is 2 years old and is our busy little chatterbox. Her T cell levels are normal, and she has a small but good number of B cells. She received her first round of killed vaccines and will go in for her next round early next year. It will still be some time before we will be able to check her titers. However, it is a bit of a tricky situation, because her IgG is going up and down, right around 400. If it goes down too low at any point, she will need to receive IVIG which will re-set her schedule for vaccines. She hasn’t received IVIG in a year now though, so her body has to be doing something right! We are hoping she just needs a bit more time for her IgG/B cell levels to go up a bit more. Aside from the low IgG, the only other issue is her ANC. It continues to be super low, despite her being 2 years post BMT. The doctors can’t find an explanation. They believe she may have neutrophil antibodies present but can’t be sure. Since she is doing so well clinically, they aren’t super worried. Just something to continue monitoring. She goes in for blood work every 3-4 months.
Everly, our 7-year-old who is not a SCID kiddo, is doing really great as well! She performed in her first Nutcracker ballet this weekend and she did absolutely amazing!
From Sy, mom to Jason (XSCID):
Jason has recently returned home from the NIH in Maryland for gene therapy. He was admitted on Halloween for chemotherapy and transplant of his corrected cells. He has tolerated everything with minimal side effects and is in good spirits as we wait for those new cells to grow. Grow, cells, grow!
From Scott (Adult XSCID):
My wife Lynn and I have been married for 21 years. Our oldest daughter is now in her 2nd year of college. My health has been good and I recently took a job with a new company.
From Andrea, mom to Jakob (ADA SCID):
Jakob received his gene therapy on July 19th thanks to the incredible work of Dr. Kohn and his team. Since then, his recovery process after transplant hasn’t been much different when it comes to isolation requirements but with incredible accomplishments inside his body. For example, he is already producing ADA which means he has completely stopped his enzyme replacement therapy injections. His cells are growing strong and at the right pace and physically he looks healthy and unbothered. Our team of doctors is calculating that by January he might be lifted from all medication including his monthly IVIG or plasma infusions. Our hope as a family for the near future is that every single ADA SCID child obtains the access to treatment they urgently deserve and in the future, the commercialization of gene therapy shows the world the benefits it brings to pediatric patients like Jakob.
From Erica, mom to Ava and Camden (Artemis SCID):
Our children, Ava and Camden, have had a great year! Their health and happiness have been our greatest gift, and we are looking forward to celebrating the holidays and the new year together.