Giovanni's Neurofibromatosis Type I Medical Fund

Hello everyone, we are Brooke and Nick Manes and we are the proud parents of our brave and resilient Giovanni and his new sister Olive. 2023 has been quite a year for our family, welcoming Olive in March and having Giovanni be diagnosed with Neurofibromatosis Type I in May. A little background information for everyone:

We moved into our new home last year and began updating the home to be a safe and clean space for us to have a home birth for our daughter Olive. The contractor that we hired took 50% of the funds upfront for the project and ended up completing very little of the work himself before we were forced to part ways after over a year of frustration and lack of accountability. Due to these delays, our only safe option was to give birth at a hospital instead of at home which was not a cost that we expected to incur during our child planning process. Olive joined us as a healthy and beautiful addition to our family and we are blessed with her smiles and presence every day.

Giovanni is approaching his third birthday this June and has been nothing short of a beam of light in our lives during this time. Like so many families, we struggled with fertility for years and eventually Brooke underwent surgery to remove a large amount of tissue caused by endometriosis. Shortly after, we found out that we were expecting Giovanni, and then within months the COVID pandemic struck. When Giovanni made his appearance in June 2020, we discovered that he had a marker for a genetic condition called Neurofibromatosis Type I (NF1). To diagnose NF1, an individual must have at least 2 markers of the genetic condition. So for the next 2 years, we have been watching Giovanni grow and blossom into the sweet soul that many know, all while monitoring for additional signs. In May of 2023, the second marker made its appearance when we rushed Giovanni to the emergency room at Children’s Hospital of Omaha because of his excessive vomiting, weight loss, and migraines. Upon his arrival, he had an MRI which revealed our worst fears. Giovanni had a brain tumor in the form of an optic nerve glioma. This caused hydrocephalus requiring him to have immediate brain surgery to relieve the pressure on his brain and to install a cerebral shunt that he will have for the rest of his life.

During this hospital visit, he was officially diagnosed with Neurofibromatosis Type I. For those unfamiliar with the condition: “The NF1 gene provides instructions for making a protein called neurofibromin. This protein is produced in many cells, including nerve cells and specialized cells surrounding nerves. Neurofibromin acts as a tumor suppressor, which means that it keeps cells from growing and dividing too rapidly or in an uncontrolled way. Mutations in the NF1 gene lead to the production of a nonfunctional version of neurofibromin that cannot regulate cell growth and division. As a result, tumors such as neurofibromas can form along nerves throughout the body.” We are still in the early phases of treatment for Giovanni and are working with the talented medical professionals at Children’s Hospital to determine the best route for managing the tumor which will include additional surgeries and a bout of chemotherapy which no child should ever have to experience.

Through this time we have been blessed with endless support from friends and family, all of which words cannot express appreciation for. It truly does take a village to raise a child, and we feel indebted to those that have aided us in our journey. However, this journey has unfortunately come with a deluge of costs that our single-income home is struggling to keep up with.

As continue into 2024, a new deductible will need to be met and additional travel and medical costs will begin to incur again. We are extremely blessed to be heading into the new year with less medical debt from the year prior thanks to our incredibly supportive village, but we know what our budget is and we know what the medical costs will be. In fact, the costs are so high that we were billed Gio's entire deductible by the end of January. We plan to make it work as best we can, but any additional support only grants us that much more energy to give to our growing family. We are blessed that we have had so many people become involved in our journey and story. Thank you to everyone that has taken time, energy or resources from their own lives to help us. We wouldn't be here without you.

An incredible amount of love and gratitude,

-The Manes Family