Phoebe was born at 34 weeks and found to have Tetralogy of Fallot, a form of congenital heart disease. She has grown into a little girl with an amazing imagination, has become an animal fanatic, and loves all things pink. Unfortunately, Phoebe started having impaired vision in March of 2016 and an MRI diagnosed DIPG (diffuse intrinsic pontine glioma) at just 3 years old. This brainstem tumor is ve
ry aggressive and has no curative options. Average life expectancy is about 9 months. She underwent the standard 6 weeks of radiation and participated in a clinical trial. She managed to shine her light for 29 months, dying in August of 2018. Now we carry her light. A foundation was started in Phoebe's name with the following goals:
1) Research: Despite outstanding advances made in the treatment of pediatric cancers, 1 in 5 children fighting cancer in the United States will still die from their disease. Additionally, no significant advances have been made in the treatment of Phoebe's form of brain cancer since the mid 1960s. Although considered "rare," 200-300 children a year are diagnosed with DIPG. DIPG is universally fatal. Research in pediatric cancers is grossly underfunded and limited. We want to help change this by supporting research specific for DIPG.
2) Family support: Most families with children facing health issues have not been able to plan for their new circumstances. In most cases, families experience medical bills, loss of wages, and can face tremendous costs associated with the need for travel and temporary housing. In addition to substantial financial burdens, families are often separated from their support systems due to the need to travel for treatment options. We support families facing pediatric illness in the Gainesville area and patients who seek treatment here. With your help, we can "illuminate" a very dark period in the lives of many families, "enlighten" others regarding the importance of funding research in pediatric cancers, and "inspire" others to take up our cause!
