Be there for Ben

There is no 'normal' way to share the devastating news that the De Leonibus family has received and for most, like us, its unexpected and unfathomable. Steve, Marina, and the kids were relocated to Marine Corps Base Hawaii on the island of Oahu two months ago as part of his active duty with the United States Navy. Shortly after the move is when Ben started to show signs of agitation and physical/mental development issues. The initial diagnosis last month after their hospital visit was severe reflux at which point Ben was put on an NG tube and discharged a week later. Over the last two weeks, Ben has significantly declined in other ways, showing signs of neurological impairment which worsen as new symptoms develop daily.

After being readmitted over Labor Day weekend, the medical teams conducted multiple tests, scans, and procedures. It’s with the most immense pain and heartbreak that we inform you of his diagnoses of leukodystrophy, a rare progressive, metabolic, genetic disease (most likely Krabbe) a terminal disease that affects the brain. Ben’s diagnosis is gut wrenching and every parent’s worst nightmare. It is the worst possible outcome imaginable. At this time, we ask that you please pray for our sweet, innocent baby boy, Ben and that God is going to grant him the ultimate peace, and his family is given the support, care, and love they need to heal during this unfair time.

Our main goal is to get the family back to Maryland by Mid-September to spend Ben’s remaining weeks or months of life under the love and care of both Steve and Marina’s families. Being in Maryland will not only give them the support they need during this time, but also allow access to the best Pediatric Neurological programs in the country that can keep Ben comfortable. We are grateful for those who have been able to provide the guidance and connections to help facilitate the things needed that are helpful to navigate Ben and the family forward.

The money generated here will go towards many expenses including specialized flights and coordination back to Maryland, housing, medical, and other unexpected costs they will likely face during this time.

Please pray for Ben, Marina, Steve, Grace, Mia and the rest of the De Leonibus/Rubbo family as they begin to navigate their way through this. It will not be easy but there is reassurance in knowing the army standing behind him. We have already seen what that is, and we know it will only continue, to which we are all grateful.

‘Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more' Revelation 21:1