Kimberly K.

Kimberly Delivers Speech At Butterfly Release

Kimberly gave these remarks to the CERN members as well as patients and caregivers at St. Jude Children’s Research Hospital, who gathered to raise awareness of this rare form of brain cancer and to collaborate on finding a cure at the 2013 Ependymoma Awareness Day butterfly release.

Kimberly Karp

Kimberly honors the memory of her son, Ryan Kennedy. Ryan was diagnosed with ependymoma in 2007. The 9-year-old fought a valiant fight against the disease enduring seven surgeries, two rounds of radiation and four different kinds of chemotherapy. Sadly, Ryan Kennedy lost his battle on May 26, 2012.

In May, our community rallied around us. They raised money for us to travel and all of our expenses and our Clarkston School District sold bracelets and started Tweeting about Ryan. We did the interviews for the local news and on Mother’s Day, I did a CNN interview about the decision that Ryan had made to stop fighting ependymoma and live his life normally like he had done before he had cancer.

On May 26 at 3:40, Ryan lost his battle to cancer, but he won the prize of being called home to be an angel. Our family decided that we would donate Ryan’s tumor tissue to CERN and I had asked CERN about this. We worked with Kids vs. Cancer to get all of the details worked out. The decision that we made was for one reason, to find a cure for this horrible disease so no other family would have to lose their child again. We wanted research. We wanted a cure.

I have become a member of the ependymoma community. We have a group on Facebook called the EpendyParents. And we need a cure! In July of 2012, we had around 200 families on our Facebook page. I remember my daughter walking up to me and saying, “Mommy, what is this?” We read though the post from families and so on and so forth. I have become very, very close with all of these families who are faced with this cancer and this disease. As of today, April 2013, we have over 350 families whose lives have been invaded by this disease. EpendyParents is our collaborative group of families sharing our experiences, providing informative information to one another, in hopes to help each other in dealing with this disease in our families.

I stand here before you respectfully honored to offer hope to our families that our impacted by ependymoma. Hope that Ryan’s 32 million tumor tissues that we donated will someday bring a cure to their children so they will never have to go through the loss that we suffered. I brought posters that I will share with you of our Ependy Warriors and Ependy Angels.

I also created a video called Ependy Warriors and Ependy Angels. To view the video, click here.

This is just a small view of the faces of ependymoma. Since Ryan’s passing, we have lost several more children, about 6 in total, we’ve lost Kyler, Alan, Chris from the UK, Aaron and Bradley. These are six angels that fought brave fights and there are so many more. These faces are here to tell you our story, to tell you that what you do is real. You are fighting for these faces for the faces of these families and friends who are devastated with this cancer.

Cancer does not only affect the patients life, but every single person in the child’s life. The brothers and sisters have to learn to live with part-time parents in and out of their lives as they arrange and re-arrange their schedules to keep up with everything. The siblings have to learn how to live without their brother or sister when they do go. The classmates of an ependy family are faced with the reality of mortality at nine years old. The parents should never lose their child this soon. Ependymoma cancer for this matter hits everyone and has touched every person.

Thank you for all that you do and know that I will continue to stand here and to fight as an angels mommy to bring awareness, raise money for research, and to make our voices know in the ependymoma community. Thank you researchers and doctors for all that you do.

If you would like to join EpendyParents, click here.