A Love Beyond Diagnosis: Lori Reite’s Trisomy Journey with Joey

Introduction

For many parents, learning about a trisomy diagnosis can be overwhelming and filled with uncertainty. But for Lori Reite, her journey with Joey was one of deep love, resilience, and advocacy. Her story sheds light on the beauty of embracing the unexpected and cherishing every moment, no matter the challenges.

An Unexpected Gift

When Lori Reite first learned about Joey’s full trisomy 13 diagnosis, her reaction was far from fear—it was joy. Joey came into her life unexpectedly and was adopted as an infant. While many might have been daunted by the medical complexities associated with trisomy 13, Lori and her family welcomed him wholeheartedly. They were elated to have Joey as part of their family, knowing that love would be the foundation of their journey together.

The Day Joey Arrived

Lori’s introduction to Joey did not follow the traditional path of pregnancy and birth. Instead, she learned about him through the Trisomy 13 support group. Knowing about his diagnosis did not deter her; rather, it deepened her commitment to giving him the best life possible. The moment she held him, any lingering doubts disappeared. Joey was not just a child with a medical condition—he was a beloved son, bringing immense joy to those around him.

“We found out about Joey through the t13 support group when he was a week old, 4 years after our son Tucker passed away. With Tucker, we were devastated at the diagnosis. Joey was not OUR devastation. Remembering the many blessings and joy that our son Tucker brought us, we were excited to bring this t13 newborn into our home to love and raise him for whatever time God allowed.”

Navigating the Highs and Lows

Raising a child with trisomy 13 is a journey of both obstacles and triumphs. Lori quickly learned to become an advocate, ensuring Joey received the care and attention he needed. The hardest part was understanding the medical challenges he faced, knowing that each day came with uncertainties. But despite the difficulties, every milestone Joey reached—no matter how small—was celebrated as a victory. Seeing his resilience and strength became a source of inspiration for Lori and her family.

“With Joey, I learned to voice my concerns, advocate for the best care, question a procedure and switch doctors if I needed to, without feeling guilty. With the help of online support groups, I learned more about t13 and its afflictions, symptoms and treatments. I was able to bring awareness to the doctors and work together with them in treating my son’s medical issues.”

Finding Strength in Community

One of the most invaluable aspects of Lori’s journey was the support she received from SOFT (Support Organization for Trisomy) and Living With Trisomy 13 Patau Syndrome. These organizations not only provided medical guidance but also introduced her to a community of parents who shared similar experiences. The friendships and connections she made through these groups offered comfort, reassurance, and hope. Knowing she was not alone made all the difference.

Words of Encouragement to Other Parents

Reflecting on her journey, Lori has a heartfelt message for parents who have just received a trisomy diagnosis for their child: Love them fiercely, advocate for them, and embrace every moment. 

“I would say the same as I did for Tucker. However, with Joey being adopted, it was very different. The doctors for Joey seemed to genuinely care and want to help give him the best quality of life. Part of me wonders if it was because he was adopted and they saw us take him on and wanted to support us every way they could. I also think the t13 peaked their medical interest because Joey was thriving, which went against everything the medical books said.”

She knows firsthand that the journey can be difficult, but she also understands the immense joy that comes from loving a child like Joey. Whether the time is short or long, every moment is precious and meaningful.

Closing Thoughts

Lori Reite’s story is a testament to the power of unconditional love and perseverance. Her journey with Joey has shown that a diagnosis does not define a child’s worth, nor does it limit the love they bring into the world. Through her experience, she hopes to inspire other families to embrace the unexpected and find strength in the community that walks alongside them.