Today we remember Nina who would have been 19 today. Impossible for me to really imagine her at 19 since she didn’t live to 4, but here she is on her 2nd birthday in her new dress from a friend of grandma’s in Kenya:
I woke up this morning remembering what an intense day this was 19 years ago and the intense week that followed. We knew she had hydrocephalus and that she’d need a shunt in her brain to relieve the CSF pressure, but we didn’t know she’d be in the neonatal intensive care unit (NICU) for a week and we definitely didn’t expect all the other medical challenges she was born with. Nor did we expect the three other major surgeries she’d need in that first year (spinal cord surgery, intestinal surgery, eye surgery).
It wasn’t until a couple of months before this picture on her 2nd birthday that we finally got a diagnosis of Fanconi Anemia (FA), and some idea of what to expect for her as a result. Up until then it was a mystery to her doctors. Unfortunately, that expectation was likely a short life due to the type of FA she had. She had a pretty great year from this birthday through the next one. And then a month not so great due to brain surgery to remove a new tumor, but then a really great summer of family visitors, and good early fall before her decline and departure.
Outcomes are much better now for people with FA, but it’s still tough for many. These improvements are largely thanks to the efforts of researchers supported by the Fanconi Anemia Research Fund (FARF) and all the family and friends who’ve raised money for them to fund research over the years (including ours). Much of this research has shed light on, and improved treatments for, cancer as well as FA due to physiological pathways in common between the two and the higher determinism for FA.
Anyway, it’s been a long road, but we feel very lucky to have had Nina in our lives for part of it. Hug the ones you love.