A Story of Love, Hope, and Faith: Amiee Dillingham and ClayLynn Mullens

Introduction

Every trisomy journey is unique, but for Amiee Dillingham, her story with her daughter, ClayLynn Mullens, is one of profound love, faith, and resilience. Unlike most parents who receive a trisomy diagnosis for their biological child, Amiee’s experience was different—ClayLynn was her biological niece, whom she would later adopt as her daughter. Through uncertainty and fear, Amiee and her family found strength in their faith, their community, and most importantly, in ClayLynn herself. This is their remarkable story.

An Unexpected Diagnosis with a Unique Twist

When ClayLynn was diagnosed with Full Trisomy 18, Amiee’s family faced a situation unlike any they had experienced before. Her sister was set to be induced when the devastating news arrived. Fear and uncertainty clouded their minds—what would this diagnosis mean for ClayLynn? How would the family navigate the challenges ahead? But amidst the fear, one thing was certain: ClayLynn was deeply loved, and they would stand by her every step of the way.

“So our story is unique as my daughter is biologically my niece. My sister had her and asked us to adopt her. At first our family was devastated. The doctors were very set on we wouldn’t have much time with her and pretty much made it seem like a death sentence. We decided we were going to give it to the Lord and put our faith in whatever he had planned for her life.”

A Scary but Beautiful Beginning

The day ClayLynn was born was nothing short of emotional. The medical uncertainties surrounding Trisomy 18 made the experience overwhelming, yet love was at the heart of it all. Amiee and her family embraced ClayLynn for the precious gift she was, knowing that no matter what lay ahead, they would fight for her, cherish her, and give her the best life possible.

“It was very scary. My sister was set to be induced the next day but she fell off so we went in and baby’s heart rate was dropping with contractions so she had to have an emergency c section and we were all scared for her and baby as she is young and that was a traumatic thing. Once I found out my sister was doing great and the baby was here and doing good I felt calm and once I laid eyes on her I was at peace!”

Faith, Challenges, and Finding Joy

Over time, Amiee’s perspective on Trisomy 18 shifted. What once seemed terrifying became a journey of faith, acceptance, and gratitude. She believes that ClayLynn’s life was part of a bigger plan and that God’s hand was present in every step of the journey.

“I think for my family we were able to see God work and realize nobody really knows besides him and it’s up to our children on how hard they are willing to fight. I think the most rewarding part has been how amazing she is doing and how quick she came home(3 weeks old). The hardest part is sometimes you will get a doctor that doesn’t see things the way you do and that’s hard to take in when they are so negative!”

Of course, there were challenges. Medical hurdles, uncertainty about the future, and the emotional toll of advocacy were ever-present. But through it all, Amiee found moments of pure joy—watching ClayLynn grow, feeling the warmth of her presence, and knowing that she was making a difference in her daughter’s life. Every challenge was met with the unwavering belief that ClayLynn’s life had purpose, and every victory, no matter how small, was celebrated.

The Role of Community and Medical Support

Amiee found tremendous support at OSF Children’s Hospital, where the majority of ClayLynn’s care was handled. The doctors, nurses, and specialists became more than just medical professionals; they became part of her family’s journey. Their guidance, expertise, and compassion helped navigate the complexities of Trisomy 18, offering reassurance during the most difficult moments.

“We were at OSF children’s hospital and most of the doctors and all the rest of the staff were amazing in navigating what she needed and being on board with our goal for her which was to get her home. Our palliative team was amazing and we currently have hospice support as well. We have also been blessed with other resources through extra to love and other families going through the same thing. Their stories bring so much hope for our daughter’s future! We also have an amazing support community at home as well which makes all the difference!”

Beyond the medical team, Amiee leaned on her faith and the trisomy community. Support groups, other parents who had walked similar paths, and the kindness of those who understood the journey provided a much-needed foundation of hope and encouragement.

Words of Encouragement for Other Parents

To parents who have just received a trisomy diagnosis, Amiee offers these powerful words: Don’t give up hope! Doctors will provide statistics, and the medical outlook may seem discouraging, but every child is unique. ClayLynn defied expectations, and so can many other children with trisomy. There is always hope, and there is always love to guide you through.

“Don’t give up hope! Remember that the doctor’s job is to give the statistics and negatives, but that does not mean that your child will be in that statistic. And remember that you are your child’s advocate so if you feel that your child isn’t receiving the care they shouldn’t be afraid to speak up and say it!”

Conclusion

Amiee Dillingham’s journey with her daughter, ClayLynn Mullens, is a testament to the power of faith, love, and resilience. What began as a frightening diagnosis became a path of profound meaning and joy. Through every challenge, Amiee has remained steadfast in her belief that ClayLynn’s life is precious and filled with purpose. Her story serves as an inspiration to all trisomy parents—reminding them that even in the face of uncertainty, love and hope will always shine through.