A Message to Our Dads from Our Own Dr John Oldenhof

Dr. John Oldenhof is a father of a child with the STXBP1 disorder, Chief Scientific Officer at BioPharma Services, and Adjunct Lecturer in the Department of Pharmacology & Toxicology at the University of Toronto. John's son, Lukas, was diagnosed with epilepsy in 2011 and in 2013 it was determined that this was the result of a missense mutation in the STXBP1 gene. Since then John and his wife, Izabella, have been involved in the STXBP1 community and he currently serves on our Scientific Advisory Board.

John shared this note of encouragement on LinkedIn for Father’s Day 2024:

At my work I was asked to write a Happy Father’s Day message and they encouraged me to share.

"Being a father comes with both joys and challenges. It is a day to celebrate the choice we made to become parents and to acknowledge the impact we have had on our children. And hopefully, our children appreciate it too 😉.

Father’s Day brings mixed feelings for me. I probably face more challenges and experience less joy than many fathers do. I know that I am not alone BioPharma Services Inc. and that others face more challenges than they may have anticipated.

As many of you know, I have a son with a genetic epilepsy and severe intellectual disability. Except for the very first Father’s Day, after Lukas’s birth, and before his disease became apparent, Father’s Days have been kind of hard for me.

Father’s Day is a reminder of how my son has never been able to say happy Father’s Day or I love you. It is a day where I reflect on how we do not do the traditional things fathers do with their sons, like throwing a baseball, playing soccer, roughhousing, or as I had hoped teaching him about science.

It is a time when I think about all the things my son’s life would have been like if he were neurotypical: going to high school, pursuing a university degree, finding a partner, discovering himself.

Instead, my life as a father has been one of attending countless doctor’s appointments, spending more time at the hospital than at resorts, and advocating for his care.

Although I miss those typical things and I am doing a lot of untypical things, my life as a father has been more meaningful than I could have ever imagined. My involvement with the STXBP1 Foundation and being able to apply my science and clinical experience to help not just my son, but all children with his condition, is immensely satisfying and rewarding.

Being a father of a special needs child has meant that being a father is even more important and my impact even more profound.

So, Lukas won’t be able to say thank you, but I know he would if he could. I also know that because of his condition, I am connecting with fathers and parents in a common endeavor. I am part of a community that gives special meaning to my life.

I know that there are other fathers who face hardships in their roles as dads. It may be an underlying medical condition, or challenges our kids face at school or in their personal lives.

On Father’s Day, it is important to reflect on the role we play in shaping and advocating for our children’s lives. If we are lucky, our kids will recognize and express their thankfulness, but in the end, we can feel good about the responsibility we took on the day they were born and continue to uphold every day.

Let me say a big thank you to all the fathers for the regular dad things you do, but more importantly for all the extra, unexpected, and hard things you do as a dad!

Happy Father’s Day. You deserve to be proud of the job you are doing!"