In Memory of a Rebel for CP Families

The following is a message I posted on Karen Pape, MD’s memorial page on her website. For those who are not aware, Dr. Pape was a neonatologist and neuroscientist that was working to revolutionize care with patients diagnosed with all forms of Cerebral Palsy (CP).  Dr. Pape worked tirelessly to help thousands of families around the world better their lives with CP.  This included infants, toddlers, children, teenagers, young adults, older adults with CP that had been told a myriad of outcomes that all added up to “not walking, not talking, etc.”  Instead of creating a train wreck of that infant’s outcome with one statement, Karen chose a different path and looked to science to find answers and hope.  She made a huge difference to many, including my daughter as it turned out. 

Sadly, Dr. Pape passed away on Saturday, 2 June.  But her life’s work will live on in The Pape Foundation.  Karen asked that in lieu of flowers that the public consider making a donation to the Pape Foundation when it is up and running.  Doing so will help carry Karen’s message across the globe and train professionals and help families with CP recover.  Contact is Wing Lam at [email protected] to be added to a mailing list as the foundation comes together.  You can also consider buying Karen’s book via Amazon in the US or Amazon in Canada.  I myself have purchased copies and given them away to many, many families.  It is worth every penny, I assure you.

My message and my story on Karen’s memorial page:

I remember when Karen reached out to me years ago via LinkedIN. I run the NICU Pros list, Early Intervention Pros list and more and she knew instantly that we needed to talk as she prepared to publish her book The Boy Who Could Run, But Not Walk. We talked by phone and there was an instant connection. I was excited to hear about her background, her work and her book. We worked on ways to help get it out there and we did.  At the time I quietly noted to Karen my former 30-week preemie, then 11 years old had always had some issues with running and with walking and that I had always quietly asked doctors if this wasn’t more than just low muscle tone and later more than gross motor delays and still later more than just Developmental Motor Coordination Disorder.  I mentioned that I had always felt that the diagnosis was wrong.

Little did I know that I would be needing Karen’s help when Becky was diagnosed officially at 13.5 years old. My frustration was audible to Karen as we talked by phone that winter. This rebel, this “difficult” person in the field of CP and baby brain science was nothing but straightforward, understanding and respectful as I poured out my rage at the establishment in this field and how people didn’t seem to truly get that this was a catastrophic mess in my mind. She helped me understand how things had played out medically and where the mistakes likely happened. She also confirmed and connected the dots with me that my daughter’s “slight curvature in the spine” as told me months early by the baffled pediatrician was consistent with the CP. She gave me some ideas of where to start. After 6 months of typical PT, appointments and other interventions that burnt out my daughter and myself, we stopped everything and took account of where we were. And this was only in the first year of diagnosis so I could only imagine what other families before us had done to keep their minds straight and focused.

After the new year I contacted Karen again noting that we were definitely struggling with this and wondered if she had other thoughts. We talked, she said it was time to go see Pia Stampe in New York and get a CP Intensive. A short time afterward we spent a long weekend in New York and Pia was truly phenomenal. Becky came away walking better, running better and with a confidence and excitement that floored my husband and myself. She looked at me and said, “Thank you.” Yes, my TEENAGER! Prior to leaving Pia that last day, she took a video of Becky and myself to send to Karen who was by now very sick. To hear my daughter speak to Karen with such awe and gratitude was amazing. In a few days she got the theory, she understood what Karen had been trying to teach medical and therapeutic professionals for a long time. And she was living proof that it worked.

I finally got to meet Karen a month ago in Toronto. I got to give her a hug, say thank you in person. I also handed her a note . . . from my Becky. It totally moved her. It was then that we discussed the impending foundation.

While I know Karen would have loved to see this come together, I know she left this effort in very, very capable hands. She will be missed but she will always be remembered, always be thanked for being “difficult,” for being that rebel. For every infant, child, teen and adult that has received help from her over the years is now her ongoing living legacy alongside her own family. We carry it forward along with her. 

Thank you, Karen. Thank you on behalf of the thousands of families you have helped over the years including mine.

With Love & Gratitude,
Deb Discenza