Rylee's Hope for Li-Fraumeni Syndrome Families

Rylee's Hope for Li-Fraumeni Syndrome (LFS) Families

Rylee passed away in January 2024 after battling 3 primary cancers for almost 5 years.  Rylee battled brain cancer (astrocytoma), bone cancer (osteosarcoma), and a soft tissue cancer on her ovary (angiosarcoma).  

Rylee's cancers were all driven by her Li-Fraumeni Syndrome (LFS), a rare inherited genetic disorder that greatly increases the risk of developing several types of cancer. Rylee, her sister, and her father were all diagnosed with LFS in 2013, after her father, Ryan's, third cancer diagnosis in his lifetime.  LFS is not curable, nor are there currently any treatments, the only course of action is hyper-vigilance, with annual screenings (brain and full body MRIs primarily) to catch cancer as early as possible.

Rylee's Cancer Journey:

• April 2019: Rylee was diagnosed with her first cancer, a brain tumor (grade III astrocytoma).  This first battle required a 13 hour surgery and 33 rounds of proton radiation. Over the next three years, the tumor returned twice, each time requiring additional surgery and different attempts at treatment. 
• October 2022: Rylee's doctors discovered a bone cancer (osteosarcoma) on the back left side of her skull.  This new cancer was unrelated to her first cancer, but also driven by her LFS.  After just her first round of chemo, it was discovered that her brain tumor had returned for the third time.  Her CHOP team switched gears to attempt the impossible... treating 2 aggressive pediatric cancers at the same time.
• August of 2023: After keeping her brain tumor and bone tumor stable, the team discovered a third cancer, an angiosarcoma (a soft tissue cancer), on Rylee's ovary.  The CHOP team and Rylee faced battling three different cancers now, but with limited options due to the complexity of her cancers.

Fundraising for Breakthrough Research:

Rylee took on each new battle head on, without complaint, never cried once, and was usually more concerned about the well-being of her treatment team and family.  Our family fights LFS together and we are a super close and resilient family, but LFS families are often left off the priority list when it comes to receiving research dollars to find better solutions.

After our experience and the realization that treatment options would only materialize with research dollars directed towards LFS and the cancers that affect not just LFS patients but also many, non-LFS pediatric cancer patients.  We started this small fundraising page to help direct dollars towards CHOP's LFS research efforts in honor of Rylee.

Rylee was nominated to serve as a 2023 CHOP Parkway Run & Walk Ambassador (her team was "Rock Star Rylee: One Step Closer").  While Rylee wasn't one who enjoyed extra attention, she said, "I want to help the kids I see at the CHOP hospital".  Rylee's team raised over $45,000, which was well beyond our expectations to hopefully raise $10,000.  Since Rylee raised so much money, CHOP established their first LFS dedicated fund.  "A Cancer Predisposition Fund at CHOP, with funds earmarked for Li Fraumeni Syndrome Research in honor of Rylee".

CHOP's Cancer Predisposition Program has several promising research programs that may help both in the diagnosis, monitoring, and ultimately treatment of patients with LFS.  This work cannot progress fast enough and it will not progress without research support.

THANK YOU for supporting Rylee's wish to help kids with cancer!  Pediatric cancer research is the greatest hope families with LFS.  When you are diagnosed with cancer, your only hope is that the doctors have a great treatment option for you.  100% of your donation goes to supporting cancer research in Rylee's memory at CHOP!