Benjamin’s Fight Against Mirage Syndrome

Hello everyone, my name is Felicia and I’m starting this go fund me on behalf of my brother Dj and my sister in law Melissa, to cover medical cost, hotel and food while in the hospital and possibly funeral costs for their grandson Benjamin. Melissa and Dj have had custody of Benjamin since leaving the NICU.

Baby Benjamin was born on December 11th 2023. He was born with a rare genetic disease called MIRAGE syndrome. MIRAGE syndrome is caused by a mutation in the SAMD9 gene, which is located on chromosome 7. It's usually diagnosed in early life, and most patients die before the age of two due to invasive infections.

Benjamin spent the first couple months of his life in the NICU. Once he was finally strong enough to be discharged home, Benjamin needed care 24 hours a day and his grandparents never left his side.

During Benjamin’s first year of life, he has been loved and grown into the most sweetest baby. Benjamin has also had a very hard time in his short life. He has been hospitalized several times with Pneumonia, RSV, Rhino and much more where he has had to spend time in the ICU.

This week was the newest event. Benjamin went to the hospital right before Christmas, where he was diagnosed again with RSV, Pneumonia and bronchiolitis. He had a fever of 105, after it was brought down and controlled, Benjamin was discharged home where he was able to spend Christmas with his family.

On 12/27/24 Benjamin was having difficulty breathing and was brought back to Baystate via ambulance. He is still struggling beating all the infections he’s had prior to Christmas. Once admitted, it was noted one of Benjamin pupils appeared larger than the other. Doctors did a CT scan and noted Ben now has fluid on his brain. He’s currently being transferred to Boston Children’s Hospital where they will plan to do a surgery to relieve some of the fluid.

Surgery is currently on hold until Benjamin’s temperature goes back down as it keeps spiking on and off do to the other infections his little body is already trying to fight off.

We are asking for Prayers for Benjamin and his family. Any donations to help pay for meals/ hotels and medical bills that will arise from this stay in the hospital. Melissa and Dj have both had to take leave from work, or work when able to which is not often in order to care for Benjamin. Bills are piling up and they also have three other children in the home. Unfortunately with Mirage Syndrome, most children do not live past the age of 2, trying to be prepared, we are also accepting donations for a funeral fund. We have hopes that Benjamin will pull through this and fight with all his might. I am just trying to make sure Melissa and DJ have the ability to give Benjamin everything he needs with minimal stress during these trying times.

Thank you all in advance for the prayers and donations. I will keep updating as Benjamin’s story develops.

12/29/24 update- MRI showed no actual fluid on Ben’s brain. Instead Ben’s brain is not growing as fast as the rest of his head. He has air not fluid between his brain and skull. Ben also had a spinal tap this morning which came back with normal results as well. Ben did stop breathing shortly due to the anesthesia. Ben’s fever broke again last night and seems to be staying down. This morning Ben had 3 seizures in a 5min period. This is very unusual for Ben. He is currently being hooked up for an EEG to monitor for more seizures. They will also be completing another sleep study tonight. Ben is non reactive right now. He looks like he’s just sleeping. Please keep praying.

12/30/24-small update while waiting on the Doctors to come in, Ben had several grand mal seizures since yesterday all throughout the night. His fever has also spiked again. They will be redoing the spinal tap at some point. Ben also still has the eeg on to help with monitoring seizures and try to determine what’s going on. I will update later once Melissa is able to speak to the doctors.