June 2026   Recently updated !

June 2026, SCIDFoundation.org

What would you do with a 2nd chance? – More than once, Myles and his family were given the heartbreaking news that his chances of survival were extremely low. Learn how a researcher gave Myles renewed purpose through art.

SCID Family Meet-up –  We’re planning a SCID Family Meet-Up at the IDF 2026 National Conference. Will you be there?

chatSCID – Are you a SCID patient or parent? Join us for connection, support, and real conversation. On June 22nd, we’re planning a very special Zoom event recognizing all the SCID Dads, Stepdads, and Grands. Join us!

Meet Myles

By: Myles, ZAP70 Deficiency SCID patient

My name is Myles, I am 23 years old, and I was born with Severe Combined Immunodeficiency.

My immune deficiency is different from that of other forms of SCID. I was born with a mutation of my ZAP70 gene, which is responsible for creating a special protein that directs the development of, and activates special immune cells called T cells. T cells are responsible for identifying foreign substances and helping to defend the body against infection. T cells are also like “commanders” or “generals” of other immune system cells. Having a deficient ZAP70 gene can result in the total, or significant, loss of T cells, and consequently the loss of the ability to command other essential immune cells. This makes a ZAP70 SCID patient extremely susceptible to many forms of infection and other illnesses.

This type of SCID can also cause complications with lymph nodes, which can ultimately lead to lymphoma.

At around 6 months of age, I received my first bone marrow transplant, with my dad as the donor. Roughly 6 months later, I received a booster. Then, at 3 years of age, I was diagnosed with lymphoma from a tumor in my stomach. It was promptly removed via surgery and I went on to live a relatively normal life for the next several years. However, I battled sickness often, I was on subcutaneous IVIG for most of that time, and although I was strong enough to be at home, I did not attend school during those years.

By the age of 9, I began to develop a multiplicity of issues – acute pneumonia that would last for weeks, severe joint pain, and vigorous infections. After several months of struggle, it was concluded that I’d need another bone marrow transplant. This one, however, was set to be much different than the one that preceded.

My doctor told me I’d have to go through chemotherapy prior to receiving the transplant to wipe any remainder of my immune system out to make way for the new transplant. After that, I’d stay in the hospital in isolation until the transplant began to work. It was set to be about a 6 month long process.

One week before being admitted for the transplant, I was diagnosed with lymphoma for the second time. The doctors had to treat the lymphoma and then do the transplant back-to-back, placing my chances of survival at less than 5%.

My 6 month treatment “plan” turned into almost a three year long stay that would go on to change the rest of my life. There are many stories and things that I could tell during that time, many situations of suffering, pain, loneliness, frustration, anger, sadness – all of it. It was no doubt the most painful time of my entire life. Physically, mentally, emotionally, and even spiritually. However, I prefer to focus on the facts and the kindness of strangers rather than the suffering aspect. The suffering aspect of it all can be important in gaining an understanding of the severity of the condition – but I am guessing this audience already knows all about that and I’d like this short letter to be more than just “shock value.”

During my three years of treatment I met David, a researcher who worked in the hospital. His research focus was on oncology. This man was also an artist. I’d taken up an interest in drawing, which helped pass the time and it kept me focused on something other than just the pain. I started out tracing, but quickly moved to freehand. I experienced a harsh learning curve in my drawing journey and it became more frustrating than fun. That is when David agreed to dedicate his time to come in and teach me. 

Learning the fundamentals from him greatly improved my skill level. His simple devotion of time, just a few hours a week to teach something so basic, made me continue with the craft, a hobby I’d go on to do until present day.

Toward the end of my treatment, I was diagnosed with Graft-versus-Host Disease (GvHD). GvHD is a result of the transplanted cells attacking the healthy tissue of the recipient. It can take place in many “forms” affecting the intestinal tract, the liver, or the skin. GvHD is ranked in stages, stage 1 being minor, stage 5 being severe. I experienced stage 5 in my stomach. When the GvHD came along, doctors once again placed my chances of survival as extremely low. To treat the GvHD, I began a treatment called photopheresis, a specialized immuno-therapy treatment that filtered out my white blood cells and used UV light to calm down my immune system. Miraculously, the treatment worked and my GvHD subsided over the next year. As it subsided, I was discharged from the hospital and cleared to go home to recover. The recovery process was long. My muscles had atrophied so much throughout treatment that I struggled to do basic things like take walks or go up the stairs. It was another year or so of recovery and rebuilding my strength before I finally enrolled in school for the first time in 7th grade.

I was behind in my education, behind physically, and behind socially. For the most part, symptoms of my condition faded away and I was left with the results. The condition was outside of my control. A mass of medical issues was not something I could control, but my starting point afterwards was. I did have control over my actions, how I caught up on my education, and how I could put myself out there socially.

I did everything I could to catch up, to not waste my second chance. 

I’ve gone on to compete in powerlifting, graduate college early, work briefly within the film industry, and ultimately find myself working for a charity where a big part of my role is using my art talents to give back to the patients and families I come across on a daily basis.

Are you planning to attend the  IDF National Conference in San Antonio? Mark your calendar for a special SCID Family Meet-Up on Friday, June 26th at 3:30pm. Join us for connection and refreshments.  

Please email Barb Ballard at Barb.Ballard@SCIDFoundation.org if you’re a SCID family member planning to attend the conference and be sure to provide your email address and cell number. You’ll receive an invitation with the details for the gathering. 

If you know of other SCID families who will be attending, please forward this email or share the information on how to connect with us. 

chatSCID is a monthly one-hour virtual meet-up designed for SCID caregivers and adult patients at any stage of their journey.

June chatSCID!

Register Now!
for our special June chat SCID because
June is for Dads!
This June, chatSCID is celebrating the incredible fathers, stepfathers, grandfathers, and father figures in our SCID community 💙

Too often, the spotlight naturally falls on moms as caregivers, but dads carry so much of this journey too: the late-night worries, the hospital stays, the strength during transplant, the advocacy, the quiet moments of fear, hope, and determination. This month, we’re making space for their stories.

Monday, June 22nd, 8:00 PM EDT, 7:00 PM CDT, 6:00 PM MDT, or 5:00 PM PDT.

This special event will be hosted by Johnny Wu, proud dad to triplets — two daughters and a son with XSCID, who understands firsthand the strength, resilience, and support dads need on this journey. Share your experiences. Talk with other fathers and caregivers. Listen, laugh, vent, or just feel understood. And to all the moms reading this: encourage your guy to join. Because fathers matter in the SCID journey too. There’s a different kind of connection that happens when dads talk to dads, and Johnny has a wonderful way of making everyone feel welcome and supported.

This month, chatSCID for Dads and an in person get together at the National Conference highlight the conversations that matter. They remind us that behind every medical chart is a parent doing their best to hold everything together.

The SCID Foundation exists to make sure no family walks this path in silence. Through education, emotional support, scholarships, and research funding, we help lighten the load in moments when it feels heaviest.

And none of this happens alone.

It happens because people choose to show up for families they may never meet, but care deeply about. Whether through a donation, volunteering time, or sharing our mission, you help create a network of support that reaches families when they need it most.

Together, we are building something steady in the middle of uncertainty: connection, compassion, and hope that lasts far beyond a single conversation.

Let’s keep it going. Together we can continue building community where no SCID family feels isolated.

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