My mission: Our Journey with deletion of chromosomes 18 & 4

The purpose of Walk4AJ18 Welcome to walk4aj18, where we aim to raise awareness about Partial Trisomy 18 and provide a platform for individuals to share their experiences. Today, we want to share our personal journey with you, from the moment of diagnosis to the surgeries and therapy sessions that have shaped our lives. When our son was diagnosed with Partial Trisomy 18, our world turned upside down. We were faced with uncertainty, fear, and a whirlwind of emotions. But amidst the chaos, we found strength and resilience. We knew that we had to be our son's biggest advocates and provide him with the best possible care. Our journey began in the NICU, where our son spent 3 in a half months of life. It was a rollercoaster of emotions as we watched him fight. The support of the medical team and the love and prayers from our family and friends kept us going during those challenging days. As our son grew, we faced numerous interactions with specialists who helped us navigate the complexities of missing chromosome 4 & 18. From geneticists to cardiologists, each doctor played a crucial role in our son's care. We learned the importance of asking questions, seeking second opinions, and being actively involved in our son's treatment plan. Surgery became a part of our journey, as our son required procedures to address specific health concerns associated with Partial Trisomy 18. Each surgery brought its own set of challenges, but we never lost hope. We celebrated every milestone, no matter how small, and found strength in the progress our son was making. Therapy sessions became a regular part of our lives, as we sought to provide our son with the tools and support he needed to thrive. Occupational therapy, physical therapy, and speech therapy all played a crucial role in his development. We learned the importance of consistency, patience, and celebrating even the smallest victories. Throughout our journey, we realized the power of sharing our experiences. By opening up about our challenges, triumphs, and everything in between, we found a community of individuals who understood our journey. We discovered the importance of taking control of our own narrative and not letting the literature define our son's story. If you are facing a similar journey with Partial Trisomy 18, we want to offer you some thoughts and tips: 1. Be your child's advocate: Ask questions, seek second opinions, and be actively involved in their care. 2. Celebrate every milestone: No matter how small, every achievement is worth celebrating. 3. Find support: Connect with others who are going through a similar journey. Sharing experiences can be incredibly empowering. 4. Take control of your narrative: Don't let the literature define your child's story. Embrace their uniqueness and celebrate their individuality. 5. Be resilient: There will be challenges along the way but remember that you are stronger than you think. Our journey with Partial Trisomy 18 has been filled with ups and downs, but it has also been a journey of love, hope, and resilience. We hope that by sharing our story, we can inspire and help others facing similar challenges. Remember, you are not alone, and together, we can make a positive impact in our communities. Stay tuned for more blog posts and personal stories on walk4aj18. We are here to support you every step of the way. With love and hope, The walk4aj18 Team