Giovanni's NF1 Treatment & Family Medical Costs

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.

Sitting down together and going over the stack of bills that we have accumulated, we finally reached our breaking point as we realized that the large amounts and quantity of payments and our single household income were not going to add up sustainably for our family. We have a difficult time asking for help, but we have found ourselves needing to grow our village and reach out to the community for financial assistance. All funds will be directly used for medical expenses that have been incurred among our family this year. We know that we are just one of many families going through challenges in today’s world. We hope that these blessings we receive may be paid forward in the future by our family as we overcome these obstacles and help Giovanni live as normal of a life as he can during and after treatment.

06.02.23 Update: Today Giovanni is having his second brain operation to address the growing tumor, hydrocephalus and to get another biopsy. Our hearts are breaking for him but we know he is brave, strong, and resilient. We are floored by the generosity and support that everyone has shown our family. With these additional operations and chemo beginning in a few weeks, it is truly a blessing to be able to focus on his recovery and not the financial toll this has had on our family. 

06.12.23 Update: Giovanni will begin chemotherapy this week, an enormous milestone on this journey to recovery. We have begun seeing the old Giovanni at home as his hydrocephalus is reduced and the shunt begins evening out his fluids. He is using new words, forming complete sentences, playing outside, climbing stairs and even jumping on his mini-trampoline! We hope that these behaviors stay intact as we begin chemo, but we are prepared for him to regress a bit with the changes he will endure.

07.07.23 Update: Giovanni is now 4 weeks into his 10-week initial chemotherapy treatment plan. He is still rambunctious and performing cognitively better than he ever has. We were able to make the most of his birthday at home last month while allowing family and friends to spend some time safely with him in his immuno-impaired state. The support from everyone has kept us going, thank you.

We are leaving the fundraiser open per the request of many and would like to specify that any unused funds at the end of his chemotherapy and recovery will be donated to NF1 Treatment and Research so that others in the future may have an easier journey than those before them. Giovanni begins chemotherapy the week of 6/12 and we will have a better idea of the duration of his treatments following the 12 weeks of this round of chemotherapy. Blessings to all of you. 

08.17.23 Update

Giovanni is now almost 3 feet tall, has gained the weight back to 30 lbs and is overall doing very well. The challenges continue every day as the chemo meds wear him down and cause nausea and headaches. We have adapted as best we can, especially with a 4-month-old in tow with us everywhere we go. The struggles continue, lack of sleep, increased travel costs, time away from those we want to be spending time with, medical bills are mostly current but continue to come in as he sees more and more specialty physicians. The blessings that we have incurred along the way have absolutely helped us on this journey and we are beyond grateful. This journey is far from over, especially as we enter flu season. More updates to come.