through social media, but has been a critical and invaluable resource for our family.

This is of course a devastating diagnosis for any family, but we truly believe that our son Levi is a blessing and is meant to be in our family. His dad, big brothers and I will continue to be his biggest advocates, cheering section, and support system. We will continue to always have high expectations for him and provide him with the best possible life, filled with happiness and joy.

THE BEGINNING

My husband and I are high school sweethearts who have been married for over 15 years and have always wanted a large family. Our first two pregnancies were wonderful experiences and we welcomed two amazing boys into the world who are kind, smart and funny, and truly remarkable human beings. After our middle son was about 18 months old (who at the time was our second born),

TRULY REMARKABLE: (Opposite page) Levi at 2 years old; (Above, left to right) Levi at 6 months old; at 12 months; and with his older brothers at 16 months. "We do not know what challenges Levi may face as he grows older and starts school, but all we can do is take it one day at a time, love him for who he is, and do everything we possibly can to make sure he has every opportunity to live his best life!"

we began trying to get pregnant again to expand our family. In 2018, after two early miscarriages, we were thrilled when we found out we were expecting our miracle rainbow baby. In June of 2019 our family was blessed with our third beautiful baby boy, Levi.

Typical pregnancy, ultrasounds, and genetic testing lead us to believe this new addition to our family would be no different than his older brothers, but life had other plans. When Levi was born, I immediately noticed his almond-shaped eyes and wide nasal bridge but was assured he was okay and just had smaller, deep-set eyes like his dad. Levi was doing well as an infant but always struggled to gain weight and stayed on the low end of the growth curve (which was red flag number two). As he grew, I noticed more issues like difficulty holding his head up, difficulty pushing up on his arms, placing weight on his legs, and he was not able to move to larger size bottle nipples or eat pureed foods. With a Ph.D. in Early Childhood Studies and having had experiences with two older children who are neurotypically developing, I knew Levi was not meeting certain developmental milestones with physical, cognitive, and feeding development. After I advocated for support and answers,

Levi was diagnosed with a rare genetic disorder called WiedemannSteiner Syndrome (WSS).

THE ROAD TO DIAGNOSIS

As mentioned above, I had concerns about Levi from the day he was born, but we took him home where he was breastfeeding okay and having wet and dirty diapers. There were not too many concerns at first. Then, from about his fourth month of age, I began asking our pediatrician if she thought something else may be going on with Levi because he was not hitting developmental milestones like holding his head up, pulling his head up during tummy time, and his eyes seemed to be crossing. She recommended we wait and watch as some children take longer to develop these skills.

Between his sixth to seventh months, I began voicing my concerns again to our pediatrician, Levi was now on a mix of formula and breastmilk, having difficulties swallowing and choking when

we tried to move up bottle nipple sizes. He gagged on any type of baby purees (even homemade and stage 1 foods that are watered down). He gagged on puffed cereal bits and yogurt melts, and he was beginning to have issues with constipation. He also was unable to roll over or rock back and forth on his hands and knees. Again, our pediatrician gave us some suggestions to try with the food and bottles and constipation, and we decided to give him more time to meet developmental milestones in his own time.

At his nine-month check-up, when he was still unable to eat purees, could not sit up on his own, still had trouble holding up his head, and his eyes seemed more crossed, our doctor and I agreed it was time to seek outside evaluations for Levi. She referred us to a neurologist, a geneticist, a pediatric ophthalmologist, and a feeding therapist.

EARLY INTERVENTION

At nine months, Levi was evaluated by a local feeding therapist at a private therapy center, and the therapy was going to cost more than what we could afford at the time. A very kind therapist at that center let us know about Early Childhood Intervention (ECI), provid