My son blows out his birthday candles for the first time
A family celebrates a milestone when a 6-year-old does something unexpected
Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week was filled with fun and joy as Cayden was able to celebrate another year of life.
We threw him a birthday party at my mom’s house, where the entire family celebrated with pizza, cake, and ice cream. He opened his gifts and thanked everyone. The smile and excitement on his face as he opened each one was heartwarming. But my favorite part of the day was watching Cayden blow out all of his candles as we sang “Happy Birthday.”
Believe it or not, that was the first time he’s been able to do it. In previous years, I had to blow out the candles for him, which neither of us minded. I had no idea that he’d be able to do it himself this time, and the shock and happiness I felt in that moment is almost indescribable.
Years of progress
For years, Cayden’s lungs were weak from his infantile-onset Pompe disease. He frequently got sick and needed to be hospitalized. But in in June 2022, he began receiving Nexviazyme (avalglucosidase alfa), an enzyme replacement therapy, and since then, we’ve noticed incredible improvement in his lung function.
After this development and his speech therapy at school each week, Cayden could blow out his candles this year. His therapist has been asking Cayden to practice blowing, which is necessary to make some vocal sounds.
All that practice has sure paid off! His speech is getting noticeably better, which everyone around him has noticed. It means so much to me when others see these improvements. I’m so proud of all Cayden has accomplished, and I’m grateful that others feel the same.
Blowing out birthday candles was something I never thought I’d see my son do. To me, it was like seeing your baby walk for the first time or hearing their first spoken word. It’s a moment I’ll cherish and never forget.
I can’t wait to see everything else Cayden will learn to do as time goes by. Knowing that he has the courage to try to master a new skill makes this mama’s heart so happy. I love that despite having Pompe disease, he never gives up. He was determined to blow out those candles this year, and I’m so proud of him for making it happen.
Note: Pompe Disease 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 Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
Comments
Ann Morris
Thanks for your inspiring story. It's encouraging to know that the medication with the various therapies, and of course your support and care, are bringing new life into your family's world. Through your articles, your carry that into the large Pompe community. Ir'a inspiring that Cayden's climb has brought him growth and a taste of mastery! Happy Birthday! He has taught us all. Thank him too!