Parents connect at SCID Angels for Life

Twelve years ago, Heather Smith, mother of two children born with severe combined immunodeficiency, or SCID, decided to organize and present a conference where all families coping with SCID could come together, gain information, and support one another. SCID is a serious primary immunodeficiency that is usually fatal if not treated within the first year of a child’s life.

In order to obtain funding to present the conference, Heather established a non-profit called SCID, Angels for Life Foundation. The conference drew families from across the globe and offered them a chance to meet each other in-person.

“SCID families wanted to be face to face with other SCID families,” explained Heather.

Today, SCID, Angels for Life has phased out conferences but remains committed to its original mission – supporting families whose children are diagnosed with SCID. The mission of SCID, Angels for Life is to increase awareness of SCID, provide a safe environment for families to connect, grant family scholarships, and provide parent and family education.

The organization’s website, www.scidangelsforlife.org, contains information about the importance of screening newborns for SCID, lists clinical trials for treatment of SCID, and provides links to publications about SCID created in partnership with IDF.

The site also provides details about SCID Angels’ scholarship program. Scholarships range in amount from $1,000 to $2,000 and are offered for travel to conferences, costs associated with treatment, and college expenses.

While families who visit the site are able to access valuable resources, they can also make a direct connection with Heather when they read her story, posted on the site as both a video and a narrative.

Heather’s first son Brandon, born in 1993, lived for 6 months with his SCID undetected before falling ill in November 1993. Three weeks later, after acquiring pneumonia, developing graft-versus-host disease, and suffering a stroke, Brandon died. Doctors had diagnosed Brandon with SCID during that brief period of illness, but his health deteriorated so quickly, it was impossible to save his life.

After Brandon’s death, Heather learned she is a carrier of X-linked SCID, so she chose to have a hematopoietic stem cell transplant in-utero during her second pregnancy with son Taylor, diagnosed with SCID while still in the womb. Taylor’s treatment succeeded and has kept him healthy until recently when a drop in T cells required him to undergo gene therapy. Today, at age 25, Taylor is doing well after the treatment he received in summer 2019.

Heather said SCID Angels transitioned from a way to share her story to be a beacon of hope and support for other families just beginning their SCID journey.

“My original desire in starting SCID Angels was to keep Brandon’s memory alive and honor everything that Taylor has been through, never realizing the fulfillment I would get from everyone else in return,” said Heather.

“It’s very difficult to hear the heartbreaking stories that don’t end well, but the majority of the time I hear stories that do end well, and that is what keeps you going.”

Heather used to make contact with families through email or phone, but now a private Facebook group she maintains for SCID Angels is her primary form of connecting with families. SCID Angels Facebook group members number about 700 and hail from all parts of the world.

In the last two years, parents have been contacting SCID Angels very early on in their child’s diagnosis, often just after they receive a newborn screening test that is abnormal, but before they have the definitive SCID diagnosis.

“They want to know, ‘What should we be doing in the next steps as we are waiting?’” said Heather. “We try to point them to SCID Compass (www.scidcompass.org) but we also let them know that we are big on going to a PIDTC (Primary Immune Deficiency Treatment Consortium) center for treatment.”

Another recent initiative offered by SCID Angels is an online support group dubbed “Connect in the Cloud with SCID Angels.” It began as a monthly face to face meeting for parents at the University of California San Francisco but moved to virtual when the pandemic hit. The group is open to any parent or person with SCID who is a member of the Facebook group.

“At the start of the lockdown we were doing something to promote self-care weekly but as states have opened back up, and people’s needs have changed, we’re now doing video calls every couple of weeks,” explained Heather.

Since 1997, Heather has participated in IDF events and has lent her expertise as a mentor to other parents, and as a speaker at conferences. She also worked with IDF to ensure that SCID is included in newborn screening panels in every state in the nation.

Over the last several years, she’s helped develop IDF materials related to SCID and she currently is the chairperson for both the SCID Compass Steering Committee and the SCID Compass Patient Advisory Board. SCID Compass is an IDF program designed to offer support and information about SCID from diagnosis to post-treatment. Heather plays a major role in helping SCID Compass build relationships with parents and provides a critical eye when reviewing materials.

Heather said her involvement as an advocate for awareness of SCID and supporter of families has led to lifelong friendships.

“I find it interesting that a diagnosis like this can bring together people from all over the world and form the type of connection that will last a lifetime. It speaks volumes about the type of support that we obviously are able to offer each other and what the communities can offer each other,” said Heather.