Barb with Ray in the Duke PICU waiting
for his transplanted cells to grow
Decades of Advocacy
Barb’s journey with Severe Combined Immune Deficiency (SCID) began when her son, Ray, was around 11 months old. For the first six months, Ray appeared to be a healthy newborn, showing only mild symptoms like a runny nose and sinus congestion, which seemed like a typical first cold.
However, one Friday in October, Barb grew concerned when Ray couldn’t keep food down and seemed to have an unusual skin color. After a quick visit to the pediatrician and a chest X-ray, it was discovered that Ray’s lungs were filled with fluid. Although his lungs had sounded clear, his skin was cyanotic (bluish), indicating low oxygen levels. Ray was immediately admitted to the local hospital.
This hospitalization led to a transfer to a hospital with a Pediatric Intensive Care Unit (PICU), where more in-depth testing, including a lung biopsy, revealed his weakened immune system. Ray was diagnosed with SCID, and it was determined that his interstitial pneumonia was caused by the fungus Pneumocystis pneumonia (PCP), a serious lung infection common in people with compromised immune systems.
In 1994, Duke University Hospital in Durham, NC, had the most experience in treating SCID patients, so Ray was transferred to Duke. Ray’s condition had deteriorated, and he was on a ventilator for breathing support. He was transported while on a ventilator. He would remain on ventilatory support for 3 months and would require a tracheostomy before being able to breathe on his own again.
Since Ray had no siblings, Barb was chosen as his donor for a bone marrow transplant which occurred just after his 1st birthday.
Barb and Ray spent the next 10 ½ months living at Duke Hospital. During their stay, Barb met other SCID families who were also facing long hospital stays, including Lisa Hellier, another SCID mom, who introduced herself to Barb on her first day at Duke. Occasionally, she encountered families with older SCID patients returning for follow-up visits. Seeing these healthy older patients gave her hope, as they appeared to be managing well despite the same disease.
It became obvious that most SCID families knew little of one another. Typically, they had only met one or two other families. Barb felt she needed to find a way to help these families connect and share their experiences. By 1996 she had built a website at SCID.net and began to search for more SCID families. With a handful of families, she started an email group, manually compiling letters once a week and sending them out to each member. Through her Duke contacts, she was eventually able to gain access to the listserv service at Duke University and utilize that system to create a listserv to handle the emailing process.
One of the first SCID moms Barb met whose child had not been treated at Duke was Heather Smith, who later founded SCID Angels For Life Foundation. Over the next 20+ years, the SCID listserv brought together SCID and CID families from around the world. For 18 years Barb served on the Board of Trustees for the Immune Deficiency Foundation. She also served on the Board of SCID Angels For Life Foundation until she was hired as the Director in 2021.
When Heather Smith dissolved SCID Angels at the end of 2024, Barb wasn’t ready to end her involvement with the patient population who had become her extended family. She created a new organization, the SCID Foundation, to continue to provide the advocacy and support she has been providing for many years.