The Problem I See With 'Everything, Everything' as a Mom to a Baby With SCID


Editor’s note: This post contains spoilers about “Everything, Everything.”

There’s a new movie coming out soon called “Everything, Everything.” It’s about a girl who has severe combined immunodeficiency (SCID), who’s lived her entire life indoors, never able to experience the outside world because she could die — until that fateful day she meets the boy next door (through the window, of course) and decides to risk it all. I’m not usually one to share my opinions but… this is just too near and dear to my life, and I cannot stay silent. After all, awareness is the first step in making a difference, right?

I’m a sucker for young adult books and movies. It’s not that I think “Everything, Everything” is going to be a horrible movie with bad acting. I’ll probably eventually see it, and if I can get past the false information about SCID, I might even like it. Like I said, I am a sucker for cheesy love stories – the ones that draw you in with the drama and unrealistic story lines. The problem with “Everything, Everything” is that SCID is real. SCID has taken the lives of far too many babies. SCID affects real families across the world. I have cried endless amounts of tears over what SCID has done to my family, to my daughter, and to families that were once strangers who I now have come to know and love.

Still not sure what SCID is? Let me enlighten you! Severe combined immunodeficiency, more commonly known as “bubble baby disease,” is a rare, life-threatening, genetic disease that leaves babies with no immune system, no way to fight off any sort of illness. Even the common cold could be deadly. These children must stay in isolation either at home or in a hospital room while waiting for their only chance at a healthy life: a bone marrow transplant — a process that often involves high doses of chemotherapy, weeks to months of living in the hospital, parents separated from their other children, siblings not able to bond or play together.

Can you just imagine receiving an unexpected call from a pediatrician you’ve never met telling you to immediately take your not even 2-week old baby to the hospital for blood work? “Keep them covered and away from people. They likely have a life-threatening illness that you’ve never even heard of before.” That’s if you’re fortunate enough to live in a state that screens for SCID at birth. Some families find out later on, only once their baby has caught something and isn’t getting better. Sometimes it’s too late. Can you even imagine not being able to kiss your sweet little newborn? Telling new grandparents, aunts, and uncles they can’t hold your baby, they can’t even visit? Staying in strict isolation for months to years, living in a hospital room? Praying for a matched bone marrow donor just so your baby can have a chance to live? Or hoping your child is eligible for an experimental treatment because no donor is available? Watching as grown adults hold your screaming infant down to try to gain access to a vein? I could write a list a mile long of the struggles SCID families go through. But I think you get my point.

The problem with “Everything, Everything” is not that Hollywood is once again using illness to tug at the heart strings of their audience; that’s never going to stop. The problem is it is a complete misrepresentation of what families affected by SCID actually endure. I hate to spoil the story for you, but I’m going to anyway. One of the biggest problems with it is the mother has made it all up — her daughter doesn’t have SCID. Yeah, yeah… I know this is a fictional story, it’s just a movie, I get it. But as a mother to a child who actually has SCID, this is a slap in the face, a punch in the gut. I live in a constant state of worry, wondering if I am doing enough to keep my baby healthy. I would never wish this life on anyone, and the thought that any mother could ever force this life upon their own child is horrific. Oh, how I only wish my baby girl didn’t have to fight for her life. Right now, I can only dream of the day my daughter can go outside and play in the yard, meet other children, be held by her grandparents who haven’t held her since she was a week old. One day…

dad and mom with baby with SCID

I’m not trying to discourage you from seeing this movie. You can make that decision for yourself. Go be entertained, eat some popcorn, drink an ICEE. All I am asking is that if you do see this movie, please, please, please… as you walk out of that theatre, remember that SCID is real and it is not at all like this movie is going to portray. Remember my baby girl and others like her who are fighting this battle in real life.

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