The Bredwells

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Addilyn was born in November 2016. After a completely healthy pregnancy and no prior knowledge of Addilyn’s health conditions, she was diagnosed with three heart defects, unexplainable tremors, and a possible brain bleed within the first couple of hours of her life with no explanation. Four days later, she was diagnosed with a submucous cleft palate. With a heavy heart, I was juggling my new role as a mother while also attempting to balance the countless doctors’ appointments, unanswered questions, and overwhelming amount of confusion and fear. After patiently waiting for the blood test results, we received a phone call confirming that Addilyn tested positive for 22q11.2 deletion when she was two months old. Initially it was extremely difficult to cope with her diagnosis, but I quickly realized that 22q does not define who my daughter is or who she will become- it is simply a part of her DNA. Since Addilyn’s diagnosis she has continued to surpass all of my expectations on a daily basis. While she has excelled tremendously, there is no denying that there have been several difficult and discouraging moments for us. Simple things such as swallowing, eating, and weight gain were every day obstacles for her. From the first night Addilyn came home from the hospital she constantly had, what we referred to as, extremely alarming “choking episodes”. Unfortunately, one evening Addilyn experienced the episode that we had always feared. After spending a restless night at the hospital, we left with no specific explanation as to why those episodes occurred. We are so thankful for the endless support we have received from the 22q community and their willingness to be so open about their personal experiences because their advice led us to discovering Addilyn’s vascular ring. Addilyn was diagnosed with a right aortic arch with aberrant left subclavian artery forming a vascular ring which explained the underlying issue as to why those unsettling episodes occurred. Through Addilyn’s journey we have realized how people within the community and medical field aren’t always fully aware of 22q, which is why we are so thankful to be a part of the 22q community. It is comforting knowing that there are other families all over the world that can completely relate to your child’s story. It is truly a blessing to be able to interact, share, support, and lean on other families who can relate to the ups and downs many of us experience throughout our own personal 22q journey. When we first received the news of Addilyn’s diagnosis I was extremely hurt and fearful of what this meant for her future. But in hindsight I have realize how 22q has highlighted the amount of bravery and strength she has within her. Within the first year of her life she has overcome numerous battles but more importantly she has had countless accomplishments. Every achievement, big or small, every milestone, every good or bad day, I have witnessed Addilyn’s determination to grow. To say that I am extremely proud of my daughter would not begin to explain how I truly feel. Weekly, it is evident that she is eager and determined to learn new skills as she continues to quickly develop in her occupational, physical, and music therapy. Addilyn went from struggling to meet simple milestones at a young age to now easily excelling at more mature skills. Addilyn is now sixteen months old. She is walking, talking, dancing, and quickly catching on to ASL. She is eating and drinking independently and we are thrilled to say she is now down to only one heart defect. Addilyn is simply your average little girl with a missing piece of one chromosome. She has a big heart and a sweet soul - a personality that can light up a room and a family and community that endlessly loves her. Although I never anticipated these circumstances for my daughter, Addilyn’s 22q journey has completely changed our lives for the better. Her journey has pushed us to grow individually while simultaneously allowing us to build an even stronger bond as a family. 22q has led us to meeting and connecting with numerous incredible people. From bonding with her doctors and therapists, to connecting with random individuals we meet within our everyday lives. Addilyn and her journey has easily become the biggest blessing in my life. When I look back and reminisce on her journey so far, I am reminded of some of the most painful and challenging moments we have encountered. Nothing can prepare you to becoming a 22q parent; nothing can prepare your heart for the painful moments it will endure while watching your child struggle to overcome numerous obstacles. But when I reminisce on her story, I am reminded that the best part of being a 22q parent is the overwhelming amount of joy your heart feels when you watch your child’s determination push them to achieve the smallest or biggest accomplishments. My hope is that through Addilyn’s story the world can become more aware of 22q11.2 Deletion. More importantly though, my deepest desire is that families coping with the diagnosis can find hope and comfort in her journey and find peace in their child’s plans.

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