It’s been a two-way street. I’ve gotten just as much as I’ve given out.
The 1st SCID Angels Newsletter featured Taylor Dahley who was born with XSCID. Taylor is the son of the founder of the organization, Heather Smith. It is appropriate that for our last newsletter, we hear directly from Heather, so she can share her feelings with all our readers about what SCID Angels For Life Foundation has meant to her.
Barb: You were connected to the SCID community even before establishing SCID Angels as a non-profit organization in 2008. You and I and several other SCID families met virtually in 1997 with the advent of the SCID Email Listserv and later many of us met in person at the XSCID Conference in Bethesda, MD. What recollections would you like to share from that time?
Heather: I’ve known some of these families for almost 30 years and today many are still some of my closest friends. Although I wouldn’t wish this SCID journey on anyone, there are so many things that have come out of it that have been life-altering for me and have made my life even better. I’m grateful to have had this community to walk alongside me.
I think that’s part of what makes this community unique. I’ve seen decades of interactions with people who have really been active and have participated in the group when they’re in the thick of it with a newly diagnosed child. We also have a whole population of people who have been together for decades. They may not write into the group regularly but when they do, they pick up right where they last left off. These people are there at the drop of a hat when you message them. There are even former caregivers who still follow along with the daily trials of newly diagnosed families. We’ve become a big family and I’ve been blessed to be a part of that family.
The SCID journey is so complicated and long-lasting that families come to realize that things are going to pop up down the road, or emotional moments will occur that nobody else besides your SCID family will understand, so it’s nice to have that bond you can depend on.
Barb: Tell us what the SCID community has given to you over the decades.
Heather: As much as families are telling me how much SCID Angels has done for them, I have to express how much the community has done for me. While families would come to our Facebook forum to ask questions, it has also been a safe haven for me to share my emotional highs and lows along the way.
Whenever I’ve doubted my parenting skills or ability to care for a child with such a complex medical condition, the families have been there to validate that my instincts were on track. It has taken me years to be able to trust that what my gut is telling me is correct, but thanks to the feedback provided by so many families, I no longer feel like I’m guessing.
For me it’s been a place that was a soft landing. I might not have a medical degree or initials after my name, but I’ve spent years learning the jargon, studying the lab work, seeing commonalities across families and have been able to feel I understand what’s coming next for patients and their caregivers.
I’ve never felt judged, and I’ve never had to explain myself. I don’t think very many people can say they’ve ever been a member of a group like that.
Barb: What types of concerns or life experiences do you remember bringing to the community?
Heather: I remember sharing my own feelings of PTSD. You know, how you feel when you pull into the hospital garage or you walk into the hall of a hospital and you get that first smell, it brings up memories that trigger flashbacks of what your life previously looked like. Some of these are memories of the dark places or the challenges I’ve experienced. This group has been the place I’ve been able to go to and share those feelings and know that they’ll be reciprocated and validated.
Personally, I’ve gone from Taylor developing and thriving as a toddler to going to school, then high school, and college. Then I found out oh no, he needs another transplant. At that point, I needed to lean on the group again, the same as I had done 20-plus years earlier. It felt like I was starting all over again, but everyone was there for me as we realized that he needed to seek additional treatment. That’s what I mean when I say this is a lifelong family that you want to stay closely connected to because you never know when you’ll need everyone again.
Some of the SCID families were even the ones to give their approval of my marriage to John. As we’ve all seen, SCID is difficult to manage, and relationships often fail amid all the chaos that can occur. When my marriage with Taylor’s father ended, so many from the SCID community were there for me and stood by my side. Down the road when it was time for me to start dating, a group of SCID moms were right there to vet and scrutinize John, making certain he was the missing piece to our puzzle. Now, twenty years later, I can safely say, “They nailed it!”
Barb: What do you feel has been your greatest accomplishment since starting the foundation?
Heather: Playing a key roll collaborating with other organizations to get newborn screening passed for SCID in the US was a dream come true, and a major accomplishment that took a decade to accomplish. But the single most rewarding accomplishment must be when I spearheaded the treatment of a SCID Iraqi family’s treatment to Rome, Italy. The family had already lost one child to SCID and poor Al-Hassan was so sick by the time I had gathered the medical records, obtained the necessary paperwork, organized his transportation and received permission for him to receive treatment in Rome. It took multiple transplants and over 1 ½ years to get him well enough to return home to his country. I still find it hard to believe that I was able to pull the necessary resources (with a grant from the Roots & Wings program through the Jeffrey Modell Foundation and because of the generosity of the medical team at Bambino Gesu) I was able to prove to myself, I can do hard things. Al-Hassan and his parents recently returned to Rome for a follow-up visit at Bambino Gesu and I couldn’t believe it when the family sent me this beautiful picture. (See below) He is doing so well and has come so far!
Barb: Do you have any additional thoughts to share?
Heather: I want everyone to know how much they mean to me. I want you all to know how much you’ve given me, and how much it has warmed my heart each time I heard that I’ve been a positive part of someone else’s SCID journey.
It’s been a pleasure collaborating with the top physician’s and patient organization groups in the country. We must never take for granted how fortunate we are to have such dedicated and compassionate individuals caring for our SCID and PI children and family members.
I’ve been hearing from families all over the world thanking me and now it’s my opportunity to thank all of you for what you’ve given me. I want you to know it’s been a two-way street. I’ve gotten just as much as I’ve given out.
Al Hassan on his way to Rome for Treatment
Al Hassan on his return trip to Rome