Aila (& Sara)

After a well-child visit at the age of two, Aila was diagnosed with a desmoid tumor where the pediatrician noticed a bump on her jaw. At the time, surgery was recommended. Aila’s surgeon was able to achieve clear margins, but had to remove half of Aila’s lower jaw and replace it with a graft of her own rib. Unfortunately, although her tumor has not recurred, she has required another extensive surgery and likely has a few more procedures to come. No matter what comes next, her mother, Sara, will be right by her side.

“My daughter, Aila, inspires me to keep fighting for a cure. She is so brave and we are so proud of her for all she has been through with a positive attitude. We are determined to help find a cure!”

Onalenna is an active person, competing in marathons and regularly exercising at the gym. In 2017, while doing some sit-ups, she noticed a non-painful lump on her lower right abdomen. She was referred to an oncologist and initially misdiagnosed and given an inappropriate treatment. She is now undergoing chemotherapy while trying to balance her career in finance and her family life as a wife and mother.

“I was literally the only person with this condition in the country, hence it was confusing. My doctor did a lot of research and traveling to help me…It has been a tough period…My son gives me hope and strength to fight for my life and be well. I am grateful for the gift of life and pray for a cure.”

In 2020, Brendan’s doctor found a lump in the back of his neck during a physical exam. A couple of weeks later, a biopsy revealed that the mysterious lump was a desmoid tumor. Unfortunately, Brendan’s tumor grew while on his first treatment, forcing him to switch to another, more cumbersome therapy.

“My family, friends, and the kids I work with give me the hope in my fight against my desmoid tumor.”

A year ago, Emma was experiencing chronic daily pain and using a walking stick and mobility scooter due to her desmoid tumor. Nothing touched the pain. She started chemotherapy, but eventually got the news that her tumors were growing. She felt hopeless and defeated. But then she learned that she qualified for a clinical trial. Though skeptical, she hoped participating would help advance desmoid tumor research and help others. Since starting the trial, Emma’s pain and mobility have improved and her tumor has shrunk.

“The trial has not been without side effects and it has been intense. However, since starting, my pain has reduced, my ability to walk has improved, and my tumour has shrunk by 25%. Science, medicine, and research is an amazing thing, and I am thankful for this turning point in my desmoid journey.”