Why we started "Mo Songs for Kerry"
This organization started after the death of our daughter, Kerry ( Higgins) Banik in 2014. Kerry was the second of our two daughters to have passed away from a very rare genetic cancer-related disease called Li Fraumeni Syndrome.
Here is a brief description of the disease and its symptoms:
Li Fraumeni is a relatively new disease discovery. It was found and investigated within the last 15 years. Li Fraumeni is a genetic disorder that manifests itself through different cancers. The TP53 gene, the gene responsible for destroying newly formed cancer cells, has a mutation that does not allow the body to recognize dangerous cancer cells and destroy them. This allows a person with Li Fraumeni to develop many different cancers over their lifetime. There is no specific cancer associated with this disease, but the most common types are:
Our family has been effected by this disease since the mid 1960's when my husband's dad passed away at 37 with a brain tumor. At that time this disease was unknown and it was thought that he just developed a brain tumor randomly. My husband's sister died from 3 different types of cancer all of which developed within a 2 year period: breast cancer, cervical, and finally leukemia. She was 32 years old at the time. This was back in 1993. In 1995 our daughter Kerry was diagnosed with a sarcoma in her thigh bone. She received chemotherapy and had 12 surgeries in her leg. We traveled to Boston to have her treatments. She was treated at Mass General and had leg salvaging surgery, which was not available in this area at the time. The doctor was able to remove the tumor and save her leg by adding a cadaver bone in place of the damaged piece of her thigh bone. The multiple surgeries were necessary to make sure her leg was stable and as she grew it grew with her. See our Bio page to read more about Kerry.
In 2002 our daughter Maureen Higgins, aged 18, was diagnosed with a soft tissue sarcoma in her abdomen. She was at stage 4 when she was diagnosed and we lost her within 5 months.
It was when Maureen was diagnosed that it was discussed that there must be something more going on than just random cancers in our family. This was just the beginning of the Li Fraumeni research studies. We were sent to Philadelphia to have DNA testing done and it was determined that Kerry was positive for Li Fraumeni mutation. Maureen had passed away at this point; it was presumed she had it too. The results and follow up treatments and monitoring were in Boston, where the Li Fraumeni research was being conducted. This lead to Kerry being followed more closely and when she developed early onset breast cancer at 22 it was detected early enough to treat.
An extended family genetic study was done and it seems that this has been in the family from when my husband's dad passed away in 1966. My husband is also positive for Li Fraumeni and is now battling his own cancer issues. With the knowledge that we have Li Fraumeni in our family, we were able to watch him more closely and his cancer was caught early. He is expected to make a full recovery. We are still traveling to Boston to be seen by the leading Li Fraumeni specialist in the country, Dr. Judy Garber at Dana Farber Cancer Institute.
This disease is being widely studied now and the occurrence within families is being traced to see if there are more families around the world that may have this mutation that have not been identified. Our hope is that by raising awareness of this disease and raising money to fund more research, we can make a difference to another Fraumeni family.
Kerry very strongly believed in helping raise awareness for this disease. While she never portrayed herself as a victim or cancer patient, she always agreed to help any researcher that contacted her. She would readily tell her story and help researchers and even young medical students from Cornell Medical School gain insight into this disease.
We hope this story gives you an idea of how strongly we believe we are doing a very good thing by having this life celebration and fundraiser.
Kerry and Maureen's friends approached us with a wish to find a way to turn their grief at losing these two beautiful women into something positive. This event is a celebration of what special women these two were and to keep their memory alive through this event and raising awareness of this disease. If we can help even one family realize that there might be some genetic issues going on, it would be worth it. If we save one family from even a small part of the anguish that we have endured, we will have honored the girls and their memory. We believe the girls would be very proud of what we are doing and would be right there beside us if they could.
Thank you for taking the time to read our story.
Read more about Kerry
Read more about Maureen
See Photos from past years
Read press clippings from past years