Melissa LeBlanc

@mezweigle | contributor
Mama Warrior to my SCID Warrior, Riley Olivia
Melissa LeBlanc

The Isolation We Experience Because of My Daughter's Rare Disease

You know that saying, “If you want to make God laugh, tell him your plans?” Well, I am laughing right along with Him! Boy, did I have plans. So many plans. Any parent can tell you that life changes after having a child. It is a warning I heard all too often while pregnant, “your life is about to completely change.” Of course, I expected changes, but I was determined not to miss out on anything. Just because my husband and I were bringing a child into this world, I wasn’t going to let it stop me from our weekly hang outs and weekend dinners with friends, days at Disneyland, weekends away. Riley would just tag along — no big deal. I had it all planned out, we were going to have a  fun, adventurous life with our new baby girl. No, I don’t really believe God is up there laughing at me for making those plans not knowing what I was about to be faced with. However, I do believe He allows us to experience trials and grief for a purpose, even if that purpose is never fully known or  fully understood by us. Just two weeks after Riley’s birth, we received a call that no mother ever wants to hear. Her newborn screening came back flagged for something called Severe Combined Immunodeficiency (SCID –pronounced skid). With not much explanation and only a quick google search, I was told to bring her to the hospital immediately for emergency blood work and to be examined for any signs of infection. SCID is a rare genetic disease that leaves a child with no immune system, whatsoever. Something as simple as the common cold could be deadly. It forces you to live in isolation, in a sterile environment away from family and friends, hiding from the rest of the world and the germs lurking everywhere. A disease that is often fatal within a child’s first two years of life. Your only hope for saving your child’s life is a Bone Marrow Transplant or an experimental Stem Cell Transplant. Unbelievable, right? I know. As a first-time mom, this news rocked my world — just like it would for any parent no matter how many children you already have. But there is something about becoming a first-time mom, you are already experiencing a mix of emotions, nervous but excited to explore the unknown world of parenting. Only now, your firstborn child has a life-threatening illness. You are no longer just learning how to care for a newborn, you are forced into a battle for your child’s life — no book, blog, or person can ever prepare you for that. Nobody plans to have a sick child. You see it happen to other families and it breaks your heart, but you don’t ever think it could happen to you. Until it does, and you quickly learn to never say never.   Being a first-time mom to a child with a life-threatening illness, I have had to grieve the loss of nearly every expectation I had of what it would be like becoming a mom. All of my plans flew out the window the moment I got that phone call. Instead of regular trips to Disneyland or the beach, it was regular trips to the hospital. Instead of meeting up with friends on Friday night, it was prepping multiple shots and medications to administer. Instead of calling my other first-time mom friends for a play date, I was calling doctors and insurance to try to get medications and treatments approved. Instead of that fun weekend away, it was weeks in a hospital room. Instead of planning the first birthday party I always dreamed of, it was planning for chemotherapy and a stem cell transplant. I have felt robbed of so much as a first-time mom and it has taken me a long time to come to terms with that. I have had many moments of weakness, sobbing in the shower, and crying out to God, asking him why and begging him to heal my child — since showering provides the only moments alone when I don’t have to be strong for anyone else. Rare disease, in general is isolating, SCID just takes that term way too literally. I share this to tell a story of hope and encouragement. Because with all of the pain and heartache, there has been so much good, so many blessings and so much to be thankful for. Rare disease teaches you more about yourself, life and love than you ever hoped to know. It teaches you to rejoice in the smallest of things. All baby milestones are fun and exciting, but when you aren’t sure if you were ever going to be able to witness your child reach those milestones… let me tell you, I feel like I want to throw a party for every new thing she learns. Rare disease teaches you compassion and empathy. It pulls out a strength from within you that you never knew was there. It brings you a community of people walking the same path, you all wish you didn’t know each other, but you wouldn’t trade these newfound friendships for anything (shout out to my warrior mamas, y’all know who you are). So maybe I didn’t get to experience all of her firsts the way I wanted to, but now we will have new firsts to plan and look forward to. I believe every thing we have been through will only make each of these moments so much sweeter than they ever would have been. I wouldn’t trade this journey for anything. Because of this rare disease that so rudely interrupted our lives, I have experienced deeper love, appreciation and joy. I have experience God’s love and faithfulness in ways I never thought possible and don’t know if I could ever put into words. Most of all, I am beyond blessed to say my daughter is alive. She is thriving. She is so full of life. Others aren’t able to say that about their child, and for that reason alone, I will never take a single day with her for granted. Follow this journey on Life With Riley. We want to hear your story. Become a Mighty contributor here .

Melissa LeBlanc

The Problem With 'Everything, Everything,' From a SCID Mom

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… 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. Follow this journey on Life With Riley. We want to hear your story. Become a Mighty contributor here .