The SCID journey: Planning for the future

What overall advice would you have for parents as they embark on their lives caring for a child with SCID?

Jason received a stem cell transplant with me as his half-matched donor when he was approximately 8 weeks old.

My advice would be to seek some type of support — family, friends, online Facebook SCID or SCID Angels. Be a gracious receiver and allow others to help you, whether it's meals or dropping off groceries. I am not a gracious receiver. I don’t like asking for help, but I was really forced to, whether it was people dropping things off or giving us hand-me-downs. I had to learn I can’t control this. Take the help and it’s OK. It doesn’t mean you’re weak, it’s just a situation you can’t control.

Initially, we used our family and friends for support. We had meals delivered to us for about five months and our in-laws lived with us for six months. I think not having to worry about meals or childcare (for our two other children) allowed us to focus on Jason.

What was the most challenging aspect of slowly introducing your child “to the world”?

We spent almost one year in isolation, so our biggest fear was all the "what if" scenarios. We wanted Jason to have normal experiences, but were terrified he might become sick.

We were very lucky. UCSF is close by and all of our immediate family members were local so we had a lot of resources to help out.

What advice would you give to parents as they enroll their child in daycare or a school setting?

I would advise to have good communication with the school/daycare from the beginning. Help the providers to be informed and aware of the serious nature of the immune deficiency. Work together to come up with a plan and guidelines. Provide written information if necessary. IDF has wonderful resources.

I just put a 504 Plan in place this year for Jason, but they were aware of his conditions.

What was it like for you as a parent to eventually return back to work?

I am a stay-at-home mom. My husband shares that even upon returning to work, Jason's health and needs were his top priorities.

What advice would you give to parents about long-term follow-up care?

I cannot stress enough the importance of continued follow-up. We make sure Jason is seen annually by his regular pediatrician, and by the bone marrow transplant team and/or immunology team at UCSF. We want to be sure that we are doing everything possible to optimize his health, which is assessed through in-person evaluations and labs.

That was ingrained in us. Please make sure you don’t just drop off the radar. You can’t feel what’s going on with the labs (bloodwork). You don’t always know.

Is there anything else that you’d like to share concerning day-to-day life with a child affected by SCID?

Jason is aware that he has SCID, and is starting to have more questions about his condition. He is conscious that he is asked to wash his hands more frequently and allowed to keep hand sanitizer at his desk. We address his questions and concerns the best we can, and will continue to do so in the future.

On a day-to-day basis, Jason is just our typical 8-year-old boy in every way — enthusiastic, energetic, and adventurous. I am continually amazed and thankful for Jason's resiliency and spirit. He is my brave SCID warrior.