January 2026   Recently updated !

January 2026 SCIDFoundation.org

Welcome to the SCID Foundation’s January newsletter. 

A SCID Dad Discusses Family Roles: In this month’s edition, we hear from Jeff, a SCID dad, who explains how family roles shifted during a critical period of his daughter’s recovery after gene therapy.

Articles Recently Published by the PIDTC: Links to two new articles on SCID, which were recently published. 

IgG Replacement Therapy: Learn what IgG replacement therapy is, why many individuals with SCID require it, and important safety alerts families should be aware of. 

Stronger Together: Let’s talk about staying connected and helping our community grow. 

I hope these stories inspire and encourage you as we work together to raise awareness and support families affected by SCID.

Meet: The Nachem Family

By: Jeff, SCID Dad

Each parent brings a different skill set to the SCID family’s situation. It’s typically assumed that care and comfort will come from the mother, and the father will be less engaged and focused on bringing money into the home. While I feel all parents should make a point to become involved in the medical decision-making, some are not as comfortable with that as others. We, as parents, need to learn to lean on each other when either parent is overwhelmed.

In our family’s story, our ADA-SCID daughter, Eliana, went through a harrowing complication, called hemophagocytic lymphohistiocytosis (HLH), several months after being treated with gene therapy. This condition arose because as her T-cells began to come in, her immune system was triggered by some stimulus to defend her, but because it was still fledgling and therefore imbalanced, it could not keep itself in check. Eliana had an inflammatory response, with transient rashes and fevers that landed us in the hospital while her doctors investigated.

These days, that early condition would be classified as Immune Reconstitution Inflammatory Syndrome (IRIS) and a short course of low-dose steroids will usually get things back on track. However, at the time, nobody was sure how her gene therapy treatment would be affected by using low-dose steroids to cool her immune system off, so the doctors waited and observed. 

After a month, Eliana, was released from the hospital, but the transient fevers and rashes continued for several more months. Unfortunately, this allowed IRIS to develop into HLH, a potentially fatal condition. HLH can become life-threatening within two months, so early intervention within the first month is critical to improve outcomes. Even then, if it isn’t controlled within the first few weeks, permanent organ damage, including brain damage, can result. When we noticed a change in Eliana’s behavior, we took her in for bloodwork within a day, and as soon as the results came back, she was hospitalized immediately.

While Eliana was hospitalized for HLH, my wife Caroline, who has had a long-standing anxiety condition, began to feel overwhelmed by all the information coming from various physicians. At a certain point, she said to me that she wanted me to take the lead with interfacing with the doctors, so that she could stay composed and focus all of her energy on our daughter‘s comfort.

From that point on, I alone went to sit with the doctors at the morning conference, and I spoke to those who came through during rounds, and also dealt with doctors who weren’t on site via phone, email, and text. I took detailed notes on everything, and sat down with Caroline each day to go over all the information. In this way she was able to absorb it all at once without the anticipation and worry she was previously experiencing between conversations during the day. Also, Caroline was able to consistently be with our daughter, and there wasn’t a debate about who was going to take which role each time we needed to meet or communicate with another doctor.

After five weeks of diligence on the part of everyone, we made it out of the hospital. It took about eight months before Eliana was able to get off all the medications used to end the HLH and tamp down the inflammation to prevent a reoccurrence. In the end, 13 months after the initial inflammation began, Eliana was well again.

Having someone to lean on need not only include spouses, partners, or moms and dads. Some SCID parents are single parents. Hopefully, in those situations, there is a grandparent, a sibling, or maybe even just a friend, that the single SCID parent can turn to for support. Even a pair of parents might need to lean on a third party. It might only be for comforting conversation, or maybe for retrieving necessities, comforting items from home, or just meals from outside the hospital. I would encourage any SCID parent or family member to consider who that other person might be before a hospitalization or other serious event occurs.

• Outcomes Following Matched Sibling Donor Transplantation for Severe Combined Immunodeficiency: A Report from the PIDTC
• Neurodevelopmental outcomes following hematopoietic cell transplantation for patients with severe combined immunodeficiency (SCID): A PIDTC study

Severe Combined Immune Deficiency (SCID) is defined as a severe defect in both T and B cells. For many patients diagnosed with SCID, Immunoglobulin G (IgG) replacement therapy is a lifesaving treatment before and often after hematopoietic stem cell transplantation (HSCT).

Why do SCID patients need IgG? IgG is a type of antibody that is created and released by plasma B cells. It is the main type of antibody found in blood and extracellular fluid, allowing it to control infection. By binding to many different kinds of pathogens, such as viruses, bacteria, and fungi, IgG protects the body from infection.

Because most untreated SCID patients do not have working B cells, they cannot produce their own IgG. Some SCID patients still require IgG infusions even after receiving a life-saving stem cell transplant.

IgG replacement therapy is made by extracting and purifying antibodies from plasma collected from human donors. This is a very complex and time-intensive process. Batches of IgG may contain the pooled donations from 1,000 to 10,000 donors, depending on the exact product.

IgG therapy is considered an effective and safe medical treatment, but it also comes with some associated risks. Because adverse events can occur with both intravenous IgG (IVIG) and subcutaneous (SCIG) administration, it is good practice for patients or their caregivers to keep a detailed log recording the brand, lot number, infusion rate & dose, date of manufacture, and any reactions that occur during or after each dose. This documentation can help identify patterns when concerns arise. Many infusion companies and IgG manufacturers provide preprinted log booklets, though patients can also create their own from a simple notebook.

This record can also later help identify whether an infusion dose has been recalled. Given that batches contain thousands of pooled donations and recalls can occur, the Patient Notification System provides an important safety resource for patients.

The Patient Notification System (PNS) was established to provide information to patients and healthcare providers on withdrawals or recalls of plasma-based therapies. Led by the Plasma Protein Therapeutics Association, the PNS was formed and funded by product manufacturers, with feedback from patients and their families. It is a free, confidential service that is available 24 hours a day. It is operated by an independent organization that specializes in pharmaceutical notifications, ensuring that registrant information is kept confidential and never shared with manufacturers.

Each person who registers selects a preferred notification method but will also receive a first-class letter when an alert is triggered. Participants can select which product(s) they wish to be notified about. To learn more about the Patient Notification System and to register, visit https://www.pptaglobal.org/material/patient-notification-system-pns.

Supporting the SCID Foundation is not just about giving financially, it is also about staying connected and helping our community grow. One easy way to stay involved is by following us on Facebook, where we share updates, educational resources, and information important to SCID stakeholders: https://www.facebook.com/SCIDFoundation/

We are always grateful to hear from members of our community who are willing to share their story or contribute an informational article for a future newsletter. Personal experiences and practical insights help families new to SCID feel less alone and more informed as they navigate complex care.

There are creative ways to make an impact too. Hosting a birthday or Life Day fundraiser is a meaningful way to turn a personal milestone into support for others. Many donors are able to multiply their impact by using workplace matching gift programs, allowing a single donation to go even further.

Every share, story, and connection strengthens our community and helps ensure families affected by SCID have support, knowledge, and hope. If you are looking for a way to get involved, I would love to hear from you. Reach out by replying to this newsletter or send an email to Barb.Ballard@SCIDFoundation.org. 

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