“Our daughter, Darcy, was your typical baby. She was joyful, cuddly and playful. Her newborn screening tests were all perfect – no issues in sight! She hit all her milestones on time, some even early, until about ten months of age.
When her condition started to affect her, it did so slowly and almost unnoticeably. Around a year, she still wasn’t walking. I assured myself it was fine because she was an early crawler. Maybe she was just so efficient that she didn’t feel like transitioning to walking just yet. But she wasn’t even pulling up to stand, and that started to alarm us. She started to crawl a little slower, her arms turning inward to support herself better as she crawled. She started to lose her balance a little when sitting up, sometimes even falling over to the side. I took her to the doctor for her one-year checkup and expressed my concerns. The doctor eased my worry and said to continue to watch for any issues, but that a lot of babies took a little longer to start walking.
About a week after our pediatrician visit, something felt wrong deep in my mama gut. I couldn’t help but feel like this wasn’t just a little delay. I decided to call the PT she had seen for a couple months as a newborn for torticollis, or tightness in her neck muscles. She gently suggested we see a specialist at Cincinnati Children’s. What I didn’t know at the time was that alarm bells had gone off in her head, and she called our pediatrician as soon as we left so that she could expedite our Cincinnati visit and get us in as soon as possible.
Our visit came and we saw a neurologist who ran all sorts of tests and checked her reflexes. She did the one on her knee where your leg is supposed to bounce when it’s tapped- nothing. No reflex. Things like hip dysplasia and a tethered spinal cord were talked about, but these were still things I could wrap my mind around. At this point, I was anxious but could still breathe through my anxiety. They sent us to the lab and let us know it could take several days if not a couple weeks to hear back on results. In the meantime, I continued to research for myself and read lots about bone conditions, a tethered cord, etc. I was anxious, but prayer and community really helped hold us up.
I still remember it to this day- I got the call very early on the morning of July 25th, 2018.
“Hello Chloe. I am so sorry to inform you, but we received your daughter’s test results. She has Spinal Muscular Atrophy.” A little more was said, things that terrified me, and I grappled to understand. What even was this? I hadn’t come across it in my research. How can everything in our world suddenly change in this instant? And yet it felt like the earth had completely shattered around me. It knocked the wind right out of me. The rest of that day is a blur, but I can still feel the visceral feeling of my body going into shock that morning.
I remember one moment clearly though- I walked into our daughter’s room to get her from her crib. There she was, the same daughter she had been for the last 14 months, the same daughter she was 15 minutes ago before I got the call that changed everything. Everything had changed with that phone call, and yet nothing had changed about her. She was my precious little blue eyed, strawberry blond, incredibly resilient and smart and beautiful daughter. She was still Darcy. I held her and sobbed, and she looked at me with so much confusion as if nothing was wrong to her.
Appointments had to be made, information to be given, questions to be asked. I also remember them talking about something that still blows my mind to this day. Just about a year prior to this day, the FDA had approved its first ever treatment for SMA. There was a glimmer of hope, and I held onto it. But it came with shock at the price tag. The medicine for her condition had to be delivered via an injection in her spine every four months once the initial four loading doses were complete in those first two months. Each dose was $125,000 for the medicine alone. Basically, the cost of a small house every four months. This was a lifesaving medicine, one that entirely changed her prognosis, and yet it felt so out of reach.
We prepared for her first dose in September of that year, as she had to undergo all kinds of lab work and even full anesthesia to receive it. In diagnosis, we had asked her doctors when they thought we’d see a difference in strength if any. They told us that she was not guaranteed to get any strength back, but that the medicine stops the progression of the disease. If we did see growth in strength, they said it probably wouldn’t be until the 5th or 6th dose. I kid you not, once we brought her home after the first dose, I could feel her body get straighter and stronger as she helped hold herself up more as I carried her. And then, within 36 hours of that first dose, she crawled up a step for the very first time.
Since that first dose, we have watched her meet so many new milestones, and she has even started to take some independent steps on her own. Our strong and resilient girl is now almost 6, and she is the strongest person I know. She goes into her injections like a champ, charming the hospital staff with her cheekiness and joy. She goes through anesthesia and the entire procedure like a champ. And I watch as she makes friends with literally everyone around her, walking up to them with her crutches or rolling up in her wheelchair, informing them of her name, her disability, and how seriously incredible she is. I am so proud of her for just being herself, which is the most amazing human I’ve ever met.
Those first few years of treatment, we would travel from an hour and a half away the night before and pay to stay in a hotel or rental, just so we could get good rest the night before without having to rush and make the drive the morning of. It became really taxing on us to try to figure out the logistics of where we were staying, the finances each time, and the distance to the hospital so that we could be on time to her procedures. Last year though, we decided to try the Ronald McDonald House, and when I say we were blown away, let me assure you that is an understatement. The time, extreme care, generosity, kindness, and love we felt from everyone there was phenomenal. It felt as close to “home” as we could be without being in our own beds!
Darcy got to pick a toy from the magic toy closet, and she talks about it every time before we go stay, so excited to see the amazing things people have donated to love on these sweet kids just a little bit more. She gets so excited when her injections are coming up, knowing that she’s going to go somewhere fun and exciting, yet familiar and cozy like home. The Ronald McDonald House is SUCH a gift and blessing to our family, easing the strain and stress of our family around injection time. And we couldn’t be more excited to share our amazing girl with the staff there! She considers them all friends and loves to talk to each and every one. We are so grateful.” – Chloe, Darcy’s mom
For Darcy and her family, the cost of one life-saving dose of medicine was the price of a small House. For one dose. Not to mention, the life-saving care being far from home. They simply would not be able to get the treatment they needed without a place to stay, meals provided and much more. Thank you for your generosity that makes this possible for families like this.