Lily’s Fight Against Cancer and OMAS

Hi -We are fundraising to help our niece, Lily. Lily is two years old and has just been diagnosed with a rare form of childhood cancer. If you know Jacquelynn and Aaron, her parents, you know that their world has just been turned inside out, and they are in need of our help and support.

On August 16th, Lily was admitted to Akron Children’s Hospital. She had very suddenly lost the ability to walk, exhibited tremors, abnormal eye movements, and was not able to sit by herself.A large tumor was found in her abdomen and lower back. Lilly was diagnosed with a rare form of pediatric cancer called neuroblastoma along with a rare neurological disorder called OMAS (Opsoclonus Myoclonus Ataxia Syndrome) is a condition where the body creates antibodies to fight the cancerous tumor. Some of these antibodies get confused and attack the brain instead. This causes a wide range of neurological symptoms such as tremors, deterioration of speech and balance, and chaotic movements, among others. Over 15,000 kids are diagnosed with cancer each year in the US. Only 700 of these cases are neuroblastomas and of those 700 cases, only 15 to 20 are neuroblastoma with OMAS.       

Lily’s diagnosis is very overwhelming to say the least, but with proper care she can recover. She needs a complicated surgery to remove the large abdominal thoracic tumor, followed by aggressive immunosuppressive therapy over the next couple years to stop the neurological attack on her brain. Because of the complicated nature of her tumor’s location, Lily needs immediate surgery at Memorial Sloan Kettering Cancer Center in New York, a hospital that specializes in treating neuroblastomas. Unfortunately, insurance will only cover a small fraction of their medical expenses. In addition to the large emotional toil it is taken on Lily’s family, they will be left with huge medical bills.

Jacquelynn and Aaron are doing everything in their power to give their daughter a fighting chance to recover from this heartbreaking diagnosis,and we want to help them. We are seeking to raise money for Lily to assist with her medical expenses which include her surgery at Memorial Sloan Kettering, hospitalization, testing, and immune therapy. Any amount contributed will be greatly appreciated.

Lily has a long road ahead of her, but with all of our help, she can overcome this! Thank you to all those who are supporting this brave little girl and her amazing parents. Whether it’s with a donation or your thoughts and prayers, it means the world to them. We will keep you updated on her fight against cancer and OMAS.

With love,

Katherine, Kristen, and Carolynn