Support for Baby Jensen and Family

My name is Ashley and with permission of the family I have decided to start this gofundme for a dear friend and her family in their time of need. Baby Jensen was born November 16, 2022 and diagnosed with Giant Congenital Melanocytic Nevi. This condition is extremely rare. Since Jensen has been born they have been working with Children’s Hospital in Omaha and doctors out of state to continue to provide the best care they can for little Jensen. Recently he started experiencing some seizure activity. They currently remain at Children’s Hospital in Omaha and have received news that no parent wants to hear. While they continue to stay strong and have amazing support it has and will continue to take a toll on the family emotionally and financially. Jensen’s mom Desirae has worked as a NICU nurse for some years and has dedicated her career to helping other families and their babies as they navigate difficult situations at the beginning of their lives. Now Desirae, Jason, Dom and Jensen need some help to do the same. I am attaching her most recent update below.

**I know everyone had been wanting updates. Yesterday we just need a little time to ourselves....

We have been at Children's Hospital in Omaha for 3 days now. Our baby boy, Jensen, started having seizures that we were able to catch on EEG. Following that, we started him on Keppra and he had a sedated MRI of the brain and spine. We finally talked with our neurologist, Dr. Rickard, yesterday and the news was not good. They saw progression of his NCM, where they had hoped they would see improvement. He has several new lesions in his brain. Also, he previously had what we thought was a benign proliferative nodule removed, due to irritation. After getting the results back from pathology, it was an Atypical Proliferative Nodule- although not cancer, the cells are dividing too rapidly. Now, the current discussion is whether or not to do an LP? They are leaning towards no, since there is a chance for a false negative. They are also weighing the benefits of further skin biopsies and a brain biopsy. We are having a telehealth appointment with Dr. Kakhoo, from Memorial Sloan Kettering, our neurologist, and a neurosurgeon tomorrow.

I am terrified! Is it melanoma or malignant melanosis? Neither is good news. The neurologist said we are looking at cognitive and developmental delays, possible shortened life span. If it's cancer, we may be looking at chemo and trial drugs. If it's just melanosis, all we can do is manage the symptoms, i.e. the seizures, and therapies like the PT we're already doing.

My heart is breaking for my sweet baby. We appreciate everyone who has reached out and is saying prayers and positive thoughts for our babe. I will update again when we have a plan in place. **

Please consider donating to this amazing family as they continue to navigate through these difficult times. If you are unable to provide a monetary donation at this time please consider sharing so we can give this family some of the much needed support they deserve.