When people hear Benjamin\u2019s diagnosis, they often look at me and say\u2026<\/p>\n\n\n\n
\u201cI\u2019ve never heard of that before.\u201d<\/p>\n\n\n\n
And honestly? Neither had I.<\/p>\n\n\n\n
Benjamin has something called an HNF1B deletion, also known as 17q12 microdeletion syndrome. It\u2019s rare, and at first, it felt overwhelming trying to understand what it meant for him.<\/p>\n\n\n\n
So here\u2019s the simplest way I can explain it.<\/p>\n\n\n\n
This condition affects how certain parts of his body develop and function\u2014especially his kidneys.<\/p>\n\n\n\n
That\u2019s why Benjamin has cysts on both kidneys, and why his kidneys don\u2019t work the way they should.<\/p>\n\n\n\n
Right now, his kidney function is about 19%.<\/p>\n\n\n\n
That number is something I think about every single day.<\/p>\n\n\n\n
But this diagnosis isn\u2019t just about numbers or medical terms.<\/p>\n\n\n\n
It\u2019s about a little boy who still wakes up ready to play.
A little boy who laughs, explores, and lives life with so much joy.<\/p>\n\n\n\n
It\u2019s about balancing two realities at once.<\/p>\n\n\n\n
In one moment, I\u2019m managing medications, appointments, and lab results.<\/p>\n\n\n\n
In the next, I\u2019m watching him run around, laugh uncontrollably, and just be a kid.<\/p>\n\n\n\n
And that\u2019s the hardest part to explain to others.<\/p>\n\n\n\n
Because on the outside, he looks okay.<\/p>\n\n\n\n
But on the inside, his body is working so much harder than it should.<\/p>\n\n\n\n
This diagnosis has changed our lives in ways I never expected.<\/p>\n\n\n\n
It has taught me more than I ever wanted to know\u2014but also shown me strength I didn\u2019t know we had.<\/p>\n\n\n\n
And through it all, Benjamin continues to amaze me.<\/p>\n\n\n\n
He doesn\u2019t let this define him.<\/p>\n\n\n\n
He just keeps going.<\/p>\n\n\n\n
So while HNF1B deletion is a part of his story\u2026<\/p>\n\n\n\n
It is not his whole story.<\/p>\n\n\n\n
He is still our miracle.
Still our joy.
Still our little boy.<\/p>\n\n\n\n
And we will keep fighting right alongside him, every single day.<\/p>\n","protected":false},"excerpt":{"rendered":"
When people hear Benjamin\u2019s diagnosis, they often look at me and say\u2026 \u201cI\u2019ve never heard of that before.\u201d And honestly? Neither had I. Benjamin has something called an HNF1B deletion, also known as 17q12 microdeletion syndrome. It\u2019s rare, and at first, it felt overwhelming trying to understand what it meant for him. So here\u2019s the […]<\/p>\n","protected":false},"author":1995,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-92","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\n