contributed by Jeremy Lanning

My name is Jeremy Lanning, and my son, Lucas Warren Lanning, was born on 05/23/2023. He was born with Prader-Willi Syndrome. My wife Melissa and I have been married for 12 years, and our other son, James, is six. I have three children from my previous marriage. I am 49 years old, a USN/USMC Hospital Corps veteran, a former Cardiac Surgical Tech/Assistant, and currently a Licensed Professional Counselor. My wife Melissa works as a Certified Registered Nurse Anesthetist. You read that correctly; I am 49 and have five children. My youngest child is 13 months old and has a diagnosis of PWS.

We had a difficult third trimester of Melissa’s pregnancy with Lucas. Each week, we went to appointments and ultrasounds. There was heavy bleeding and some very scary trips to the hospital. With so many eyes on Lucas, you would think there would be a clear explanation. There wasn’t. Looking back on that time, my wife and I both agree that we knew something wasn’t quite right, but for better or worse… we didn’t talk about it.

We went in for induction and were waiting. Mel and I were hanging out in our delivery room, and I remember saying, “Hey, Mel, take a picture.” I was holding up the famous book “What to Expect When You Are Expecting.” I thought it was funny, being that Lucas was my 5th child. Next thing I know, we are delivering Lucas. Melissa was doing amazing, and I was helping our trusted OB with one hand and comforting Melissa with the other. There was so much hair. Being a medical professional for so long, I could tell something wasn’t right. No crying. No sounds. No smiles. Nothing. I see the Neonatologist poking her head in the room.

Lucas was delivered, and all hell slowly and steadily began to break loose. Silence. I checked on my wife. I looked at Lucas. The nurses looked at me. One of them took my phone and snapped some pictures, then told me to take some. I felt out of my body. Within minutes, everybody was gone. The life prior to Lucas was gone. We had no idea if Lucas was even alive. I was lying on the mattress on the floor next to my wife. She grabbed her wires and tubes and got down next to me on the floor. We just cried, prayed, and held each other.

The Neonatologist took Melissa and I into a private room and did her best to explain that something was very wrong, but we just didn’t know what that something was. About an hour later, as we were sitting by Lucas, tubes everywhere, tears everywhere, I felt a hand on my neck and shoulder. It was our Neonatologist. She was physically comforting me. As a burly, grown, and scarred man, I don’t get that a lot, which is sad. It was at that moment I realized we were in a very different world. The doctor said, “Let’s get them to their room.” The nurse informed us that there was no transport tech for a little bit. She hadn’t even finished her sentence before the doctor was wheeling my wife, carrying our stuff, and dragging me along to our room. We were shells of ourselves. We spent a couple of days in the NICU at our birth hospital, and then Lucas was transferred to Cook Children’s Hospital, where we lived for the next few months.

All life was suspended. The clock ticked, and the days moved at the speed of light and still molasses, seemingly at the same time. Doctors and people everywhere. Specialists everywhere. Oxygen, tube feeding, and the “cares” routine every hour. Even the basics of infant care became prescribed and clinical. All the while, I watched him fight. When I cried, I’d catch him trying to smile. When I panicked, I’d catch him being still, and I’d breathe with him. When I wanted to quit and melt away, I’d catch him working hard. I’d catch him doing unique things to communicate. It took me a minute to meet my son, and when I did, I realized that my son Lucas was “Less Than No One.” The next day as I was sitting on the couch in our room, my wife holding Lucas, a team of about ten people came by and had just received the latest round of genetic testing. We could see they saw something, and we badgered the doctor to spill it. “Just say it!” So they did. Prader-Willi Syndrome. I balled up on the couch. Everything went black. My entire being became a blob of darkness. I felt as if I weighed nothing. I dissociated. I had two clenched fists. There was no more me from before; there was just me now. When I opened my eyes, Lucas was looking at me, and again, he lifted me up. Our PWS journey had begun. I still talk about that moment with my therapist.

Our days became filled with every type of therapy imaginable. My wife and I bonded indefinitely with his caregivers. We were so loved and cared for. It was a side of medicine that my wife and I had never experienced. Whenever I looked at Lucas, I would think, “You have to fight for what most are given; you are less than no one.” That became the battle cry. My wife became my hero, and my son Lucas became my shepherd. Lucas fought and fought. We started opening the curtains and having visitors. His siblings were simply extraordinary. I brought my ukulele and sang to him every morning. Melissa took over his care and became this superhuman mother, caregiver, and care coordinator. I wrote Lucas a lullaby that was inspired by his work with each of his therapists. Cook Children’s loved the song, and we recorded it in their studio, and it now blesses others.

Sure, we were the parents of Lucas… we knew that. What we had to learn and accept was that we were his caregivers also.

Once we got home with Lucas, I decided that I wanted to allow Lucas to inspire others just as he inspired me and everyone who came in contact with him. That’s when “Less Than No One” began. It’s a simple campaign that gives a voice to the warriors that have PWS and the warriors that care for them. My wife and I created these high-quality bundles of “PWS Aware” gear. An amazing hat. Awesome koozies and stickers. Super cool silicone bracelets. All with the “Less Than No One” logo and message. The goal is to raise awareness, celebrate our warriors with pride, and raise money for the cause. This is truly the story of Lucas and every other kid who has to fight for what most are given. Every kid who is “Less Than No One.”