Piper’s life story is not anything like I dreamed of or expected for my daughter when I used to daydream during pregnancy; it is more exceptional than I ever thought. Piper arrived with a bit of drama, having flipped herself into a breech position while I was in labor with an epidural. I can laugh about it now, but determining that she had turned when my water broke and the hospital staff suddenly turning into a NASCAR pit crew in order to prep us for an emergency c-section was scary at the time. Arriving a couple of minutes afer one am, after checking APGARs, we learned Piper had a host of congenital anomalies (soft palate cleft, extra finger, fused toes, heart murmur, kidney issues, to name a few) that would dictate an extended stay at the hospital, followed by months in and out of doctor’s offices and Texas Children’s Hospital, before we received her genetic syndrome diagnosis. We had been researching all of her symptoms, trying to figure out the cause of all of her anomalies, and her genetics doctor looked at her and said he knew what she had – he needed a blood test to prove it. And he was right. Piper has a recessive genetic disorder called Smith Lemli Opitz Syndrome, or SLOS. Having been discovered in the mid 1960’s but determined to be a metabolic disorder thirty years later, Piper was the earliest diagnosed patient at two and a half months at the time of her diagnosis. Many of her doctors didn’t expect her to live very long. In fact, our attending physician told us to make her as comfortable as possible in the time she was here, expecting her to pass within weeks of being born. Her story started as one of hospitalizations and medical procedures, and we became honorary 4th year medical students, learning things like how to use guaiac to test for blood, the difference between an MRI and an MRA, how to calculate TPN and what those letters stood for, and what the corpus callosum really does in your brain. At six months, Piper flew to Portland, Oregon, to participate in a research study about her syndrome and possibly join the statin study. She was declined and we were told she would be lucky to make it to her first birthday. But they didn’t count on Piper’s joy of life nor her family’s stubbornness in getting her what she needed. Her first birthday party was a huge bash with inviting family and friends and people who had cared for her in some capacity that year, whether it was a therapist through ECI or one of the home health nurses who made many trips to check her weight. Milestones came slowly, but they came. Piper loved looking at the baby in the mirror, hearing her grammy sing songs, cuddling next to daddy and pappy and watching tv, or playing “peek”(a-boo) with mom. She was our sunshine and our happy snuggler. Every new skill, from holding her head up during tummy time to rolling over were hard won with months of practice and support. She and her baby sister sat up solo at the same time- Piper was two and a half and her sister was 6 months. Fast forward three years to Piper starting school in the ECSE-Early Childhood Special Education Program. Her story now involved making sure the teachers and aides saw Piper and what she could do, not the limitations of her wheelchair or her ID diagnosis. As she’s grown older, it’s been important for Piper to be seen as a person by those around her at school, the medical world, and the community, and for people to see her potential, even though learning and progress might not come at the rate we hoped…but that it did come. Piper has had multiple surgeries for multiple reasons – mainly orthopedic for hands and feet – and a multitude of procedures from CT scans and casting for splints and AFOs. While medical things have been a big part of her life, it hasn’t been all of it. Piper has had “boyfriends” at school, loves a particular boy band, expresses strong preferences in colors and clothing, wore Texas sized homecoming mums on her wheelchair, and has had friendships that have spanned her school years – just like a “normal” or neurotypical girl. She also wants “her” music on in the car and she steals the remote control to change the television – she just needs help with the fine motor coordination to do it. She’s been baptized and she exudes happiness and love – except when she’s tired, cranky, or sick. She’s participated in drug trials and been on panels addressing medical students on how to interact with special needs patients, had her story told to the Harris County Board of Education and appears in mandatory training for her school district staff about Cultural Compentency. We’ve met several of her SLO “siblings” and have gone to celebrations that were designed to showcase her specialness and differences. Piper was the first student across the stage at her graduation when she was 18, and now that she’s about to exit the school system at age 22, we know that she will continue to impact people around her as her life adventure continues to unfold, bringing that happy ray of sunshine smile to more people.