On May 13th of 2020, our family was complete with the arrival of Remi Rae. She was born 18 inches long and 6 pounds 6 ounces. She was absolutely perfect. Big Brother Landon & Big Sister Kenley were overjoyed with their new little sister, a sister they wouldn’t meet for two weeks. On May 14th, during what seemed to be a “normal” 24 hour newborn exam, our world was flipped upside down. An exam that should have taken 30 minutes, turned into hours with no answers. It was discovered that Remi had a dislocated hip but also that her aortic arch did not form properly. Remi was immediately given medication & rushed to the NICU where they prepped her to be flown to American Family Children’s Hospital in Madison. Due to weather, she was transported by ambulance while we panicked to get Landon & Kenley situated with family and rush home to pack as much as we could to head to Madison.
Once in Madison, it was determined that Remi’s aortic arch was very narrow & the only thing pumping blood to her lower extremities was something called a PDA. A little opening in the heart that typically closes around 24 hours of birth. Something that had it closed, our little girl wouldn’t have made it through the night. They gave her IV medication to keep her PDA open and we waited. We waited for 2 weeks while surgeons & cardiologists battled on whether or not to do surgery. “We’ve never seen this before.” “Remi is a miracle baby”. Words we will never forget hearing as it meant Remi’s aortic arch corrected itself and so did the two holes in her heart. We finally were able to take our baby girl HOME!
A few months later, we noticed Remi was not growing at the same pace a “normal” child grew. She was 9 months old still wearing 0-3 month clothing. She was & still is very small. They labeled our sweet girl “failure to thrive” and the plan to place an NG tube(tube through the nose to her belly) was put into place to help support her nutritionally to help her grow.

I’ll never forget the doctor walking in to the room & looking at everyone like we were crazy. She didn’t look like a typical failure to thrive baby. She was CHUNKY! At that moment, he knew this had to be something different. A consult to genetics was placed. After blood work for Remi & blood work for mom & dad, we wouldn’t know an answer for MONTHS. In the meantime, Remi had an NG tube placed for a few weeks but it made her oral aversion so much worse so we moved forward with a g-tube being placed right before her first birthday. This was used for medications and supplemental formula as she would not eat anything orally besides breast milk.
July 9th, 2021. A day with one phone call that changed everything. A day we will never forget. Wiedemann-Steiner Syndrome. A genetic mutation on the KMT2A gene. Something we had never heard of. Something the geneticist knew nothing about other than the fact that there was less than 1,000 cases in the whole world. We were given a website to look at for more information & more testing was ordered to check all the boxes on her health.
Spinal surgery for a tethered spinal cord, ear tubes, airway reconstruction, g-tube placement, tonsil & adenoid removal are the surgeries Remi has had to endure in her short life. With more that will happen. Occupational Therapy, Speech Therapy, Physical Therapy, Cardiology, ENT, Pulmonary, Orthopedics, Complex Care, GI. A few of the specialty areas we see, all taking place at the American Family Children’s Hospital.
Happy, spicy, a miracle, a joy to know, shy, adventurous. A few words to describe Remi. She is the reason why we do what we do. To raise awareness of Wiedemann-Steiner Syndrome so every parent can know what this genetic condition is. Remi’s Rally was founded in 2022. Just 10 years after her genetic condition was clinically founded. We do what we do to help every single WSS warrior, past, present & future.

We know how hard it is battling insurance for basic needs, the long hospital drives, the hospital stays, the hotels, gas, food, etc that come with a medically complex child. Not once did we have to do it on our own. It truly takes a village and knowing it is okay to ask for help. Not everyone has that village. 2024 & every year after, we will support families in any way we can in the Coulee Region with anything that they may need in order to give the best possible care to their medically complex child/ren and support the family as a whole.