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June 25, 2018 was the best day of our lives. Our perfect beautiful daughter Lily was born. We were over-the-moon happy! As an overthinking Mom, I did my best in those first few months not to panic over each small thing that all first-time parents face. But my worries increased when, at about 4.5 months old, Lily stopped rolling over (something she’d learned at 3.5 months of age). She also started staring off into space, feeling a bit distant. Her smile too started to fade. I remember asking my sister, who is a child psychologist, could Lily have autism? I brought my concerns to my Pediatrician, who didn’t feel I had any reason to worry. Lily seemed perfectly healthy. Little did we know that she was suffering from infantile spasms.

Every year the first week of December is designated worldwide as “Infantile Spasms Awareness Week.” That first week of December in 2018 Mickie’s Miracles, a company I had no connection to, and other epilepsy nonprofits targeted my Facebook page with videos and warnings about this rare disease known as IS. Now as a new Mom, I was constantly seeing ads on social media for baby clothes, RSV signs and symptoms, and other parenting advice. I always did my best to ignore some of the scarier content, knowing that reading about bad things would only make my worst-case-scenario brain go into overdrive. But something told me not to scroll past this particular video. So I watched. These PSA videos explained what to look for and warned how this IS diagnosis often gets confused with very benign issues. Two days later, I heard my daughter stirring in the middle of the night. I looked over at our video monitor and saw my daughter’s arms raise in the same “T” pose I’d seen in the video. A few repeated movements then she went right back to sleep. I assumed my neurotic brain was playing tricks on me. The next morning though, as I had one foot out the door to go to work, I heard my mother (who watches Lily during the day) scream. I ran upstairs and knew for sure this time what I’d seen the night before was real. Remembering what those PSAs told me, I pulled out my phone and caught some of her spasms on video. We then drove as quickly as we could to the nearest Emergency Room. There I told the medical staff, I KNOW my daughter has infantile spasms. Several nurses rolled their eyes and told me it was just gas or a startle reflex. But the attending Doctor saw the fear and determination in my eyes and ordered an EEG.

That day, December 4th, 2018, Lily was diagnosed with Infantile Spasms. The Doctor handed us the devastating news with at least some reassurance that, as MA residents, we had two incredible Children’s Hospitals at our fingertips. We were transferred to Mass General Hospital and after several days of watching our helpless baby have dozens of seizures, the ACTH treatment plan the doctor’s started her on began to work. We went home after a week and continued the shots ourselves for a month. Although ACTH helped stop her spasms initially, Lily unfortunately relapsed in early January 2019. A second ambulance ride, 40 minute long seizure clusters – our world collapsed once again. But the new treatment, Vigabitrin started to work. January 11th 2020 marked one year seizure free for our brave warrior. And after a year on Vigabitrin, we have finally started our drug wean and hope to be med free (and still seizure free) come September.

Lily’s diagnosis, my husband and I learned early on, was one that doctors (and even most hospitals) rarely see. If it hadn’t been for those ads and videos on Facebook, I wouldn’t have known what to do. But our luck didn’t stop there. My family lives in a state that has the resources and the right (and most qualified) professionals who are specifically trained to treat patients like our daughter. Not everyone, we learned, is as lucky. After’s Lily’s initial diagnosis, I went online to learn more about Mickie’s Miracles, the company whose ads had ultimately helped me diagnose my daughter. Speaking with founder Kristie made me realize how essential, and life saving, organizations like Mickie’s Miracles truly are. No matter where you live, or what your life circumstances are, Mickie’s Miracles believes that your child should have the necessary care to give them a fighting chance to treat this disease. I believe this too. And to this day I give back as best I can by staying connected to families like mine facing this horrendous diagnosis, connecting them with Kristie and her incredible team at Mickie’s Miracles when they need support finding answers or resources that will help treat their child.  

A year ago, if I’d been told this was about to happen, I wouldn’t have believed I’d have the strength to get through it. But we did. But the important note here is that we didn’t do it alone. Everyone with this diagnosis deserves the support to fight this almost invisible enemy. Everyone deserves a chance to see their baby beat the odds and get their smiles back, like we thankfully did.

So thank you Mickie’s Miracles for all that you do. Pushing for awareness and support saved our daughter. And our family will be forever grateful.

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