The Problem With Everything, Everything – From A Mom Who’s Child Actually Has SCID

The Problem With Everything, Everything – From A Mom Who’s Child Actually Has SCID

There’s a new movie coming out soon called Everything, Everything. It’s about a girl who has 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 young adult, 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 that 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 two-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 that 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 that families of a SCID baby 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 that 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 that 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 just horrific. Oh, how I only wish it was all a lie and my baby girl didn’t have to fight for her life. Right now, I can only dream of the day that my daughter can go outside and play in the yard, meet other children, be held by her grandparents that haven’t held her since she was one week old. *Sigh*… One day.

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, just 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.

Here are some beautiful SCID babies, some that have kicked SCID’s butt and others that are still fighting. These are the TRUE faces of SCID.

Remember them <3

MY RILEY GIRL – Still recovering from her Gene Therapy transplant but is doing well and it’s only a matter of time until she’s out in the world!

 

LITTLE MISS ARIA – She is small but mighty and kicked SCID’s booty!
WYATT – Going strong in his fight against SCID!
EMMETT – This little super hero kicked SCID’s BUTT!!!
JEFFREY – Handsome boy is awaiting Gene Therapy transplant!
KAI – SCID WARRIOR – 1 year old and still fighting <3 Look at that face!!!
QUINN – Riley’s BFF! On her way to a healthy life thanks to Gene Therapy!
ISAAC – Brother to Wyatt – itty bitty warrior! He is new to this fight but is well on his way!!!
KIMBERLY – this sweet girl has overcome a lot! She’s about to receive her life saving transplant very soon!

Thank you for taking the time to read! XOXO

1 Comment

  • Jenny Gardner

    I am a patient with CVID. From time to time I fall into a pity party and then I remember what families like you go through. Even though I don’t know you, I can promise you that I will be praying for you and your beautiful daughter. You and your family are real heroes. I will help get the message out that this movie may be entertaining but it is not factual. Thank you for your message.

Leave a Comment

Your email address will not be published. Required fields are marked *

back to top