Our son, Declan, began having headaches and nausea of increasing severity in the fall of 2018. Despite several visits to the pediatrician, the ailments continued. Then, one January morning in 2019, he told us he temporarily lost his vision, and we rushed him to the emergency room at Children’s National Hospital. It was clear during the exam with the pediatric neurologist in the ER that the doctor knew something was wrong with our son. And when Declan’s MRI stretched from 30 minutes to an hour to two hours, we became concerned that something was very wrong. And it was. Our ten year old boy was diagnosed with medulloblastoma, a malignant brain tumor.

There is no way to describe how we felt as parents when we were told our child had cancer. We were dealing with a force out of our control, struggling for the very life of our child.

Little did we know, however, that when we walked in the doors of Children’s National that January day, we were taking our son to one of the top institutions for pediatric brain cancer. Dr. Roger Packer, director of the Brain Tumor Institute at Children’s National Hospital, has been working tirelessly for over 40 years to understand the complexity of pediatric brain tumors and to develop treatments to improve the survival rate for children with them. We were not alone in our battle against medulloblastoma - we had on our side some of the world’s most knowledgeable and capable experts.

Over the past four decades, Dr. Packer and his team have made incredible strides against medulloblastoma and have translated their knowledge into better treatments and better survival rates. Today, these rates stand at 70% to 80% for children with medulloblastoma. Yet there is more work to be done. This is especially true for the 20% to 30% of children who experience a recurrence of medulloblastoma. For these children, there is no effective treatment available. The vast majority — thousands of children worldwide every year — will succumb to their disease.

We have been blessed to have an expert care team at Children’s National— Dr. Roger Packer, Dr. Brian Rood, and Dr. Chima Oluigbo— caring for Declan and guiding us through his eight-month journey from brain surgery through radiation and chemotherapy, and for three years dealing with all the after-effects. We are so grateful that our son is now in full remission. But the possibility of recurrence remains, and we know our fight is not over. And we know that the fight of many other parents has just begun.

According to the National Center for Health Statistics, brain tumors are the leading cause of cancer deaths in children and adolescents. Medulloblastoma is the most common pediatric malignant brain tumor. Uncovering new treatments and a cure for medulloblastoma will only be possible with the strength and work of many hands and minds. We have created this fundraising webpage to help provide the vital resources to continue the unrelenting quest for answers for our son and for every child diagnosed with medulloblastoma. Every day— thanks to philanthropic support— Dr. Packer and his team at the Children’s National Brain Tumor Institute move closer to new, safer medulloblastoma therapies and cures. We hope you will consider joining us in supporting this important lifesaving and lifetime-changing research by making a gift, and thank you in advance for your support and generosity.