December 2025   Recently updated !

December 2025 SCIDFoundation.org

Welcome to the SCID Foundation’s December newsletter. 

Remembering Heather: This month’s edition carries both heavy news and meaningful purpose as we share the passing of Heather Smith, a devoted advocate whose love and commitment to the SCID community touched countless families. 

Meet Stella: We also highlight Stella’s family and their journey with RAG2 SCID, showing how families facing SCID lean into hope, perseverance, and community support as their children grow and reach milestones in their own time.

Your Chance to Make an Impact: As we close out the year, this newsletter reflects the strength of our community, honors those we have lost, and reminds us why continued awareness, support, and advocacy for SCID families matter so deeply.

It is with a sad heart that I share the news of the passing of Heather Smith, the Founder of SCID Angels For Life Foundation, on December 13, 2025. The thought that she will no longer be in this world is heartbreaking.

Simply put, Heather was my friend. We started out sharing our personal SCID stories and went on to become advocates together. We felt like the dynamic duo of the SCID world. More than that, she was someone I could always turn to, who understood my story. She stood beside me when my world crumbled and helped me to stand again to continue the fight.

Heather was the mother of two boys with X-linked SCID, Brandon and Taylor. Brandon’s battle with SCID began when he was 6 months old, but only 3 ½ weeks after initially coming down with a cold, Brandon passed away.

When she learned she was a carrier of X-linked SCID, she became determined to learn everything she could about the disease. She became pregnant with Taylor and insisted on testing as early as possible. Through her research, she found a physician who could perform a ground-breaking in-utero transplant. Taylor was the first human patient to receive stem cell infusions while still in utero. Thanks to Heather’s tenacity and determination, Taylor was born with a working immune system.

After Taylor’s birth, Heather began to turn her determination into awareness. I first saw her when she appeared on the Donahue show with 2 other pioneering SCID advocates and mothers.

In 1996, when I launched my first SCID website to connect families across the country, Heather quickly reached out. Together, we volunteered for the Immune Deficiency Foundation, collaborating time and time again to bring attention to the concerns of SCID families. We would later continue our collaboration through SCID Angels.

In 2006, the possibility of adding SCID Newborn Screening to the recommended panel grabbed our attention. By 2008, when the first SCID Screening pilot study began in Wisconsin, the idea of a SCID Patient Conference was introduced. Heather and her husband, John, created SCID Angels For Life Foundation, and Heather turned that idea into reality.

Through SCID Angels, Heather advocated for SCID newborn screening across state screening committees, spoke at meetings, and recruited other patient families to attend meetings in their home states. By 2012, as a member of the Florida Genetics and Newborn Screening Advisory Council, she saw Florida add SCID Newborn Screening to its panel. As of December 10, 2018, all 50 states were screening for SCID.

Guided by its motto “Knowledge is Power,” SCID Angels dedicated itself to raising awareness and providing a safe space for families. Connecting with other SCID families, guiding them, and sharing similar experiences was her passion. She literally and figuratively held the hands of mothers who had lost their children to SCID. But I felt that nothing made her happier than to see the children whose lives she’d touched smiling, playing, and living life. She loved knowing babies were being diagnosed earlier, new treatments were being developed, and SCID patients were able to live long, productive lives.

Those growing and thriving SCID children, teens, and adults are her legacy. Her impact will endure for many years, in so many ways.

Goodbye my friend, I miss you.

Barb Ballard

By: Victoria, SCID Mom

My husband Brian and I always wanted to be the “chill parents.” Before Stella was born, we told ourselves we wouldn’t go overboard buying fancy sterilizers or going above and beyond to keep everything meticulous. We had read that a little bit of dirt and germ exposure can actually be good for a baby’s developing immune system.

Well… that was before we learned our baby girl was built differently than most. About a week after she was born, on a Friday afternoon, we received a life-changing call from our pediatrician. She told us the Newborn Screening test, something I had already forgotten we even did, showed abnormal results, and Stella might have something called “Severe Combined Immunodeficiency” (SCID). My mind went blank. All I heard were words like “abnormal,” “severe,” and “deficiency.” I could hear her voice, but I couldn’t process the meaning of anything she was saying. We held onto hope that it was a false positive. Regardless, we had to stop breastfeeding and go into isolation to reduce the risk of infection, because even the smallest infection could be deadly.

The next day, we got a call confirming it was not a false positive. I dropped to the floor.

Stella was diagnosed with RAG2 SCID, a SCID variant with no available gene therapy. The only option was a bone marrow transplant. It felt like something out of a movie. I said, “Sure, let’s get started ASAP,” not knowing at all what a transplant would entail. We had to wait until her organs were mature enough to handle myeloablative chemotherapy, the strongest form of chemo, because it was necessary to “delete” her cells and make room for the donor cells. I was chosen as the donor since we were unable to find an unrelated matched donor, despite our church community and friends running donor drive campaigns on her behalf. The longer we waited, the higher the risk she would develop an infection that could not only make her sick but also compromise her ability to tolerate chemo and the transplant itself.

We isolated at home for three months, counting the days until admission, praying and giving thanks every day she remained healthy.

As admission day approached, I was overwhelmed with panic and anxiety. I wanted to run away with Stella, to take her somewhere where none of these numbers or labs existed, somewhere SCID didn’t exist. In my mind, I understood that she had SCID and that treatment was the only way to keep her alive. But she looked so healthy and innocent that my heart couldn’t believe it. It felt like the world was playing a cruel prank on me.

Admission day, ironically, was the day we had been so patiently waiting for, and yet the day we had been dreading. We were relieved to finally begin treatment but terrified of what lay ahead, knowing we would have to send our three-month-old to the OR for a central line placement and ovarian preservation (to protect her future family-planning options), followed by chemo and a haplo (half-match) transplant. I remember giving her one last bath that morning, knowing she wouldn’t be the same baby when we brought her home again. In the darkest part of my mind, I worried we might not be able to bring her home at all. What I didn’t know then was that we would be bringing home a true warrior.

We were inpatient for six weeks. Stella amazed everyone by tolerating the treatment well and having minimal side effects. Naturally, we thought everything would be smooth sailing after discharge. But then we faced delayed T-cell growth, a sharp drop in myeloid chimerism, Influenza A, and unexplained neutropenia, which led to a bone marrow aspiration and biopsy. Just as we began planning for a “top-off” transplant versus a second full transplant, her T-cell counts suddenly jumped, and we decided to hold off and watch what would happen over the next few months.

After the initial jump, her T-cell count plateaued while her myeloid chimerism (the presence of donor vs recipient cells, including granulocytes, monocytes, and macrophages) continued dropping, eventually reaching 2%. Every night, I would rub her pelvic area and pray the counts would rise. Months passed, and we remained in isolation. Finally, at 11 months post-transplant, we had a breakthrough: her T-cell counts rose and entered the “green zone,” (the range of cells considered to be safe) just before the holiday season.

This holiday season, compared to last year when we were in isolation, we are now able to reunite with friends and family, and it couldn’t be sweeter.

When we first learned about Stella’s SCID, I was already in one of my most vulnerable moments, as a first-time mother, newly postpartum. I was devastated that this had happened to us. But soon, I realized how blessed we were to have found out through Newborn Screening before she ever became sick, and to have kept her healthy until treatment. We were also incredibly fortunate to receive such advanced care, including the option of preserving her ovary, opportunities that wouldn’t have been possible without the families and patients who came before us. They fought tirelessly, even after their children were treated or became SCID angels, to give future families a better chance at life. For that, I am eternally grateful.

I hope to help future patients and families. I’ve been connecting with fellow PID and SCID families in my motherland, South Korea, and advocating for the addition of SCID to their Newborn Screening panel.

With Stella’s first Life Day (transplant anniversary) just around the corner, and as we begin to see the light at the end of the tunnel, I am grateful for the new perspective SCID has brought into our lives, appreciating every moment, no matter how mundane it may seem to others. We’ve also been overwhelmed by the love and support from our friends, family, and community, which has deepened our empathy and reminded us to pray for those who are unwell or in need. I hope brighter days are ahead not only for Stella, but for all SCID patients and their families.

Stella and her parents celebrate her improved T cell count with cellular themed Halloween costumes.  

As we come to the close of this year, we reflect on the families who have turned to the SCID Foundation during some of the most uncertain moments of their lives. A diagnosis of Severe Combined Immune Deficiency means urgent decisions, complex medical information, and overwhelming fear. No family should have to face that alone.

Your support allows us to educate parents and caregivers, connect families to trusted resources, and provide emotional and financial support when it is needed most. Because of partners like you, families facing SCID are met with knowledge, compassion, and hope at a time when answers matter. 

Whether through a donation or by volunteering your time, you are helping strengthen a community built on care, understanding, and action.

Thank you for standing with SCID families and for making a meaningful difference as we move into the year ahead.

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