What We Are Thankful for This Holiday Season
A columnist sends a heartfelt thank-you to those who have touched his family's life
It would be impossible to name all of the people and organizations that have helped us over the last four years. I know that you did it from your heart and never expected a thank-you, but it is important to our family to acknowledge you and to tell others your story.
For this Thanksgiving column, instead of going through a list of names, I would like to go through a list that describes the actions we received. I am sure those individuals will be able to identify themselves. Many characteristics overlap.
Being our friend when we were in need
Thank you for inviting our family over to your house for a delicious meal. You and your family provided us moments that enabled us to live a life away from the challenges and to make beautiful memories on our journey.
For more than 30 years, we were outgoing and gregarious people. But our life was flipped upside down when our daughter was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency. As we adjusted, you were considerate of us and understood if we had to cancel plans. You continued to reach out, and we always felt your door was open to our family. When others were making negative comments, you were there to inspire us by focusing on our daughter’s accomplishments.
Showering our daughter with gifts
Thank you for the gifts you gave our daughter. You cherished her smile as much as we did; that was our gift. Beautiful dresses, toy horses, and giant fluffy Hello Kitty toys fill her room. Watching our daughter play with these toys reminds us daily of your generosity.
The healing touch
Thank you. Your dedication to the medical profession has helped many, including our daughter. You gave us consultations, therapies, care during emergency visits, surgery, and lifesaving gene therapy.
It has been difficult finding healthcare providers that have experience with AADC deficiency. Even though we have moved, you have continued to be available via teleconferencing and social media. You have given our daughter a second chance at life and have allowed us to enjoy parenthood.
Helping us provide for our family
Having a job helped my wife and me support our daughter and ourselves. You were conscious of our schedule and checked in with us. If we needed something, we never felt bad asking. We talked to other families about how it is crucial to select the right employer and how you were there for us when medical bills were mounting. Most importantly, you allowed us to continue our passion for education.
Your organization not only provided us with knowledge and resources, but you have also connected us with other groups and families. Collaboration is a powerful tool that creates exponential effects in multiple areas of our lives. We received help and were able to help others. We made new friendships as we learned to navigate the world of rare diseases.
Thoughts and prayers
Simple gestures had profound effects. Your thoughts and prayers made a difference. I can relate to being in a similar situation of not knowing how to help, and thinking that thoughts and prayers were insufficient. However, knowing that many were out there thinking of our family gave us hope.
Special thanks to our family
Although we are often separated by distance, our family has remained strong. Whenever we meet, we pick up from where we left off. You were the ear that was always there to listen when we needed to be heard. You called us, provided gifts, and sent letters of encouragement.
We lost some of you this year. Your memory lives on every day we see our daughter because of what you did for her. We were energized to go further and overcome challenges, and that energy continues.
Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.