In this special feature, we invite you into the world of a remarkable family whose story is defined by resilience, fierce love, and a determination to embrace every moment. Parents to three young children—David (6), James (5), and Lydia (3)—and two loyal pups, Ember and Copper, this family's life took an unexpected turn when Lydia was diagnosed with Prader-Willi Syndrome (PWS), a rare genetic condition caused by a deletion on chromosome 15.
From the NICU to milestones once thought out of reach, Lydia’s journey has been one of courage and persistence. Her mother’s intuition from pregnancy, the emotional gravity of “D-Day,” and the years that followed reveal not only the depth of parental strength, but also the quiet victories that make each day worth celebrating. Whether it’s hearing Lydia’s first cry at six months old, watching her play dress-up with joy, or witnessing her determination to overcome obstacles most take for granted—every inchstone is a triumph.
This family’s testimony speaks not only to the unique challenges of parenting a child with special needs, but also to the beauty of inclusion, community, and purpose. Through the support of the Prader-Willi Syndrome Association and the power of advocacy, they are not just surviving—they are redefining what it means to thrive.
Tell us a little about your family and where you are from.
My husband and I live in the St. Louis area with our 3 beautiful children, David (6), James (5), Lydia (3) and we have two fur-babies, Ember and Copper. My husband is an engineer for the railroad and outside of being Lydia’s main caregiver, I am a clinical mental health therapist focusing on supporting other families with children of alternative needs.
How would you describe your child’s personality in three words?
Empathic, jovial, yet spicy.
What are some of your favorite moments together as a family?
Some of our favorite moments as a family occur when we are on vacation; soaking up a much needed break from constant medical and therapy appointments. Just getting away to allow ourselves to relax and see our children enjoying “normalcy”; playing on the beach, building sandcastles and soaking up the fresh air and sunshine. Building these memories together are what fuels us to keep pushing through the unknowns that come with loving someone with special needs.
What brings your child joy on a daily basis?
Lydia is a very happy little girl. She finds happiness and joy in the simplest of things. Things we take for granted daily. She adores playing with her big brothers and is obsessed with her dogs. Lydia enjoys baby dolls and would make a wonderful momma someday. (Though it may be unlikely, we can always dream 🙏).
When did you first realize that your child was developing differently from other children?
During my pregnancy, I knew something was different about her but I was unsure what it was. She measured very small my entire pregnancy and I didn’t feel her move frequently. All of which was very different than our boys. Everyone reassured me that everything was fine. I was just anxious. But my motherly intuition just knew.
Can you describe the moment you received your child's diagnosis?
I was sitting alone with Lydia in the NICU; my husband had to return to working for the railroad. It was December 10th, 2021. We call it “D-Day.” I remember looking up from the sweet baby I was holding to see 3 doctors standing in the doorway. I just knew…my response to them was “I think I should call my husband shouldn’t I?”
After an hour of waiting for him to get off a train and make it back to the hospital, the 3 doctors returned to our NICU room and each pulled up a chair. They told us that Lydia’s genetic testing results revealed that she is missing a small piece of her chromosome 15, resulting in Prader Willi Syndrome. We all sat quietly for a brief moment. My husband and I turned to look at each other and in unison, we responded with “what’s next?”
Since that very moment, we both have diligently sought out the best possible care for our sweet girl leaving no stone unturned, no mile too far. She has sent us on some pretty wild adventures in her short three years of life. Adventures we would have never had the chance or even thought of taking. She is our greatest adventure!
What were the emotions you felt?
After receiving the news that Lydia was born with Prader-Willi Syndrome, there were so many emotions. Many of which we did not imagine having when welcoming a brand-new baby into the world.
This was supposed to be a time of joy, love, and celebration. But rather, we struggled with feelings of anger and grief while having so many questions of why. Why our precious baby girl? Why our family? We had immense fear surrounding what the future would hold, and we often felt robbed of the moments every parent looks forward to: the moment of introducing the new baby to their older siblings, taking her home for the very first time, taking her very first steps, dropping her off to preschool, and walking her down the aisle on her wedding day.
While all these emotions were valid and challenging to feel, we were also filled with determination. Determined to not allow Lydia’s diagnosis define her. We were determined to not allow others (medical providers) to set limitations for our daughter due to lack of experience with this very rare genetic disorder. Lydia was born with Prader-Willi Syndrome; however, this is just a very small piece of who she is. It will not define her!
What were some of the biggest initial challenges you faced as a parent navigating the world?
The biggest initial challenges we faced as parents navigating the world with a medically complex baby was finding balance. Finding a balance between caring for our young boys; ensuring their needs were met while trying to figure out how to care for Lydia. I will never forget the night we first brought her home from the hospital. It was Christmas Eve; we had just been discharged from the NICU with two cars full of medical equipment/supplies and I had no idea what any of it was much less how to use it. I had no clue how to even feed her. Yes, I watched the nurses do her g-tube feedings. However, I had not done it myself, at least not without someone guiding me through it. Suddenly, it was like first time parents all over again.
Were there any key people—doctors, teachers, therapists—who made a big impact in your early journey?
We have been blessed to have many key providers on our “Dream Team” as we call it. First, Dr. Jennifer Miller at the University of FL, is the leader of our team. Dr. Miller has dedicated her career and life caring for children living with Prader-Willi Syndrome. She has been at the forefront of research and development of the recently, first-ever, FDA approved, medication treatment for Hyperphagia in PWS. We owe our deepest gratitude to Dr. Miller, her research team, and all the other families living with PWS that participated in the research studies to make this medical breakthrough possible.
Another amazing team of individuals that have made an immeasurable impact on Lydia's early journey are Jo-Anne Weltman and Jake Kreindler, co-founders of Dynamic Movement Intervention (DMI Therapy). I first learned about DMI Therapy after stumbling upon it during a sleepless night searching for anything that would help Lydia reach her fullest potential. After following Instagram videos following the same children with alternative abilities and watching the progress they were making, I was captivated.
Determined to provide Lydia with this innovative therapy, I found a few certified DMI therapists located all over the country but faced long waitlists. Finally, I saw a DMI training course nearby seeking “demo kids” for hands-on training. I eagerly secured a spot for our princess to participate.
Meeting JoAnne and Jake and participating in this training course as a “demo kid” was truly the biggest step forward for our entire family. We were witnessing our daughter’s progress—sitting up independently, bearing weight, and standing all within just a few minutes of meeting them. The amount of joy and hope this brought is indescribable. Lydia soon became a “DMI groupie” following Jo-Anne and Jake around the country helping provide hands on training to other providers. Having made several trips to Jo-Anne’s clinic, SMILE Therapy for Kids in Ontario Canada, Lydia has made remarkable progress. Jo-Anne and Jake have truly ignited our hope for the future and have fueled our determination!
How has your child surprised you with their resilience or growth?
She has experienced more medical complications, illnesses, and hospital stays than most people do in their entire life. Her determination and strength are truly unbelievable at times. Once she sets her mind to something, she will complete it. She does not allow her diagnosis to stop her from reaching her goals.
What are some specific milestones or breakthroughs that meant the world to your family?
Hearing her cry; she wasn’t strong enough to cry until she was able 6 months old. Lydia being able to drink from a bottle; getting her gtube removed. Her being able to sit up independently, taking her first steps.
How have you changed as a parent or person through this experience?
I’ve definitely gotten a lot stronger in speaking up for myself and my family. Advocating is something that has to be done for our special kids or they are lost in our broken systems.
What advice would you give to other families just beginning this journey?
To take a deep breath and stop to hold your sweet baby. Allow yourself to find joy in the journey.
What kind of support—emotional, educational, or social—has been most helpful for your family?
Our other PWS community online has been our guiding light.
Have you found it difficult or empowering to advocate for your child's needs in public settings?
At first, it was difficult. Still is at times.
In what ways has your local or extended community embraced your child?
They have adjusted to the dietary restrictions that Lydia requires to keep her safe and have adjusted their lifestyle to accommodate her.
What role does clothing or fashion play in your child’s life?
She is a princess. She loves dressing up and dancing around.
How do you choose clothing for your child—comfort, sensory needs, expression?
Comfort and expression.
Has your child ever had a favorite outfit or dress that made them feel particularly special?
No, not a favorite but she gets so excited for a new pretty dress or shiney shoes.
What does it mean to you when a brand includes children of all abilities in its storytelling?
I seek them out. Inclusion is everything for us. The journey can be very isolating and when a company goes above and beyond to include/accommodate our girl, it brings great relief and joy to our hearts.
What has your child taught you that you wish the world understood better?
She has taught me patience and to celebrate the small victories. Every “inch stone” is worth a celebration!
If you could describe your journey in a single sentence or image, what would it be?
The sun still shines through the rain.
What are your hopes for your child’s future?
Have a happy, healthy, independent life.
What would you like people to feel or understand after hearing your family’s story?
That Lydia and individuals with special needs are much more than their diagnosis.
You chose an organization for us to partner with to donate a portion of our proceeds to. Tell us some more about this organization and what it has meant to your family.
Prader-Willi Syndrome Association - They are the leaders and supporters advocating for our children’s needs. Researching, funding, advocating, bringing awareness to this very rare genetic disorder. They have provided us with a sense of community and belonging.
Lydia and her family were provided with a photoshoot opportunity in partnership with Megan Grace Photographs where Lydia could showcase her new dress and shine like the star she is. She loved getting her hair and make-up done, and she surprised us with how well she walked through the park and even conquered stairs! According to mom, this was the first time Lydia walked down the stairs with her legs instead of scooting down on her bottom. I couldn't get over how fierce Lydia was in her new dress and fashionable sneakers that she chose to pair with it.
Dalyas is proud to support Lydia and her family by donating 10% of sales from May 13th - 20th 2025 to the Prader-Willi Syndrome Association.
As part of the Dalyas Dreamers Initiative, we also worked with Lydia to design her own custom outfit to capture her personality and accommodate any adaptive needs. Lydia's favorite color is purple so of course we have purple accents in her design! Her family chose butterflies as the main smocking pattern to represent the Prader-Willi Syndrome community as that is a symbol for the Prader-Willi Syndrome Association. To accommodate mobility challenges experienced by her and many other children on a similar journey, Lydia's design includes shorts with an elastic waistband for ease of dressing and modesty through movement. "Lydia's Butterflies of Hope" design is available for purchase and all sales of her custom design will also be donated to support Lydia and the Prader-Willie Syndrome Association's cause!
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Dream BIG Little One
Special thanks to Megan Grace Photographs of St. Louis for providing a unique and memorable photo experience for this family. Megan is a talented St. Louis based photographer that specializes in working with families of children with special needs.
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