The story of Lily
Our story began just 3 days before Rare Disease Day. On February 25th, 2018 our daughter Lily Reagan was born. Immediately we noticed something was wrong as she wasn’t breathing. The next day, Lily was evaluated by a Geneticist at another hospital, after she spoke with us and our parents, Lily was sent for a MRI, multiple Abdominal and Heart Ultrasounds, and BRAINZ (type of seizure detector) monitoring.
The afternoon of February 27th was a day that we will never forget. Looking back I find it slightly ironic that all of this happened the day before Rare Disease Day. In a room full of doctors we were informed that Lily had Zellweger Spectrum Disorder, a type of Peroxisomal Biogensis disorder. We were told that Lily faced a host of complications. She was blind, deaf, epileptic, and according to her NICU doctor, “would have no meaningful interaction with the world”. On top of all of that, Lily would pass within six months.
The doctors weren’t totally wrong, Lily suffered with lots of seizures, breathing issues, feeding issues and blindness. BUT we got lucky and Lily could hear and she absolutely had meaningful interactions with life. She changed people, she smiled at the sound of her favorite voice and noises, she loved her furry big sister, and she created an impact so large we could have never fathomed possible.
I have 2 very specific reasons why this rare disease changed our lives that have nothing to do with how wonderful, beautiful, and joyful Lily was. It has everything to do with the community.
On March 1st 2018 I was introduced to the Global Foundation for Peroxisomal Disorders. I was now in an amazing group of parents who understood EVERYTHING that we had just been through and were about to go through. That amount of comfort cannot be gained by anything else and I am so thankful that I found the GFPD.
The second most amazing thing that came from our time with Lily was the birth of our organization Lily’s List. We had so many supplies and people in our house, and not a clue how to organize any of it. We were fortunate enough that when I created an amazon wish list with items to organize our home, named Lily’s List, and pushed it out to family and friends, that every item was bought. After Lily died I needed something to fuel the emptiness. I felt like my purpose had died when Lily died and Lily’s List fixed that for all of that for me.
I knew I could take what we learned with Lily and make the lives of families like ours way better; one less thing to worry about when they came home was the ultimate goal for me. I have become extremely passionate about Rare Diseases and Family to Family communication. The worlds of families who have medically fragile children is a lot smaller than one thinks and connecting with these parents, making them feel less alone, and making their lives better has become my number one priority! I am constantly looking for ways to develop and make our boxes even better to make the lives of our families even better. As we round into Rare Disease Day just three days after what will be our daughters first birthday, I sit back and think that Zellweger Syndrome absolutely changed our lives for the better.
Visit us at lilyslist.org and check out the GFPD at thegfpd.org