My name is Andrea, and I am the mom to my son Nicklas, who has severe hemophilia A.
I am writing today to share a truly heartwarming success story about my son who has been treated with factor prophylaxis since diagnosis in 2019, and emicizumab (Hemlibra) since July 2022, with some top-ups of factor treatment when needed.
Nicklas was diagnosed with severe hemophilia A at the age of 6, he is now 11 years old. Initially, this diagnosis led to the difficult decision to stop playing hockey due to the high risk of injury. During this early phase, while he was on factor 8 prophylaxis, he continued to face restrictions that prevented him from returning to hockey. However, in the face of these challenges, Nicklas discovered a new passion for baseball at the age of 8.
For two years, while on prophylaxis, Nicklas played baseball with a constant underlying concern about potential injuries. In 2022 we transitioned to Hemlibra, which allowed him to pursue more advanced play in a development league this last spring and summer. He joined the Alberta Cal Ripken League, under head coach Ramon Valdez, who supported Nicklas throughout the year. This league and the coaches demanded increased practice, more games, and heightened competition.
Nicklas with his three amazing coaches, Sy Gonseneuaskas on the far left, Jared Caldwell and head coach Ramon Valdez first on the right.
The results were nothing short of remarkable. Nicklas played through the entire summer season without any injuries. His coaches were aware of his condition and agreed to treat him just like any other player on the team. I am very grateful for that. When he is in that environment it is as if nothing is wrong, he gets pushed to work hard, teased by his buddies, challenged by the game. Just like any other kid. And Nicklas demonstrated tremendous dedication, hard work and skill, eventually becoming one of the standout players on his team.
A highlight of his season was participating in the Cal Ripken Pacific Northwest Regional Championship in Meridian, Idaho. Despite competing against older and stronger teams from the US, Nicklas and his team performed exceptionally well. They managed to secure a victory in one of their games, which was a significant achievement and a tremendous confidence booster for all the players.
He now has his eyes set on participating in the Cal Ripken World Series held in Branson, Missouri, next year in August. In the long run, his dream is to be the first hemophiliac playing in the Major League Baseball (MLB), and he already allocated a certain amount of his future pay to “help stop the bleeding,” either here or in developing countries.
Nicklas’ success and the newfound confidence he has gained are a testament to the effectiveness of Hemlibra. His journey, from having to stop hockey to thriving in a competitive baseball league, is a story of triumph and resilience. We are incredibly grateful for the support and progress Hemlibra has provided.
Because he was diagnosed so late, he actually had a “normal” life, and then he didn’t. Having this almost “normal” life back is something we thought would never happen for him again. And now, we sometimes forget he has hemophilia. We are very grateful that the new door opened for him when the old one closed. It is rewarding to see him develop as an athlete and, with it, the possibility of building resilience and determination.
We hope that sharing Nicklas’ story will inspire others and highlight the positive impact of the treatments. Hemophilia should never hold anyone back from following their dreams!
Go team!
