I found out I was pregnant with my first baby three days after I was diagnosed with Li-Fraumeni Syndrome. My husband and I had been trying to get pregnant for a long time with no luck. We had recently learned of my mother's LFS diagnosis and we knew I had a 50% chance of having LFS as well. We decided that if I tested positive, we would pursue IVF to make sure our children did not have LFS. The universe had other plans! Just when we were about to give up on ever having children without IVF, I was finally pregnant. We were scared because we knew our baby might have LFS, but mostly we were excited to bring a new life into the world.
Josie was born in August of 2020. When she was four months old, we received the devastating news that she inherited Li-Fraumeni Syndrome. The next month, we took Josie to the hospital for her first LFS screening. After an abdominal ultrasound, our worst fear came to fruition when we heard the words "your daughter has cancer".
Josie was only five months old and LFS already struck. Josie had an 8 cm adrenocortical carcinoma (ACC) tumor in her abdomen. From that moment on, our lives were consumed by childhood cancer. Josie had surgery followed by six brutal rounds of chemotherapy. Watching your child fight for their life is something no parent should ever have to experience, but it is the reality for so many LFS families.
Josie is now 18 months old and against the odds, she has been in remission for 7 months and is thriving. We are ready to add to our family and give Josie a sibling, but after watching what Josie has gone through over the past year, we know that we cannot bear to bring another child with LFS into the world. After much deliberation, we have decided to pursue IVF for our future children so that they don't have to experience the lifelong difficulties of living with LFS. IVF is extremely expensive and is not covered by insurance. This generous grant would remove some of the financial burden that comes with LFS and help us make our IVF dream a reality.
Read more stories from the LFS community on the Living LFS blog.
2 Responses
Thank you for your story, Lauren. Our family has been dealing with the same situation with my granddaughter, Maeve. Maeve was diagnosed with an adrenocortical tumor at the age of 17 months . She endured surgery and 6 rounds of chemotherapy. She’s still on mitotane for one more month. She gets her next body scan on April 6th. We are praying that she continues to be cancer free. I would like to get in touch offline if you are interested. It’s hard to find families experiencing the same situation. Sincerely, Betty B.
Hi Betty. I am so sorry to hear of Maeve's diagnosis. I am just now seeing this message, but I would love to connect with you. You can email me at laurenhiddleson at gmail.com.