We are launching this fundraising campaign not only for Endera, but also for all children who are quietly fighting the same battle - children whose lives hang in the balance, not because of their illness alone, but because of decisions made by systems and individuals who decide whether or not they receive the care they need to survive.

Recently, we were told by doctors that they would stop providing Endera with life-saving medication. Why? Because they believe her condition has progressed too far - and that there’s no point in continuing. In other words, they’ve made a decision not to fight for her life anymore.

We believe otherwise.

This fundraiser is our way of saying her life is worth fighting for - and so are the lives of other children like her. We want to empower families, give them a voice, and help ensure that no child is denied care simply because someone else decided their life isn’t worth saving.

Endera was born prematurely at just 30 weeks, weighing only 1164 grams. At 1.5 years old, she was diagnosed with Gaucher disease type III – a rare, progressive genetic disorder that affects the nervous system.

She could not walk on her own, ate only pureed food due to swallowing difficulties, and didn’t speak in words - only in her own sweet language that we understood with our hearts. She had no cough reflex and dealt with high muscle tone throughout her body. Still, with love, therapy, and tireless care, she made slow but beautiful progress.

As her 7th birthday approached, she had reached hopeful developmental milestones despite her condition.

But a few months ago, everything changed.

She began having episodes of stiffness after catching Influenza A and her health deteriorated rapidly. She started twitching uncontrollably while awake, as if gripped by panic. An MRI revealed severe hydrocephalus - fluid building in the brain. Since then, her condition has drastically declined. She no longer responds as she once did. She is now sedated, cannot eat on her own, and is being fed through a nasogastric tube.

We’re still fighting - but we can’t do it alone.

The medications Endera needs to slow the disease are extremely expensive. Until now, her parents, relatives, and close friends have done everything humanly possible to cover the costs. But we’ve reached a point where that is no longer enough.

This fundraiser is about hope, dignity, and the right to live.

No child should be denied the chance to keep fighting because of how much their medication costs — or because someone else believes it's not worth trying anymore. We are asking for your support so Endera, and children like her, can receive the care they need to live and not just be left behind.

Every contribution, no matter how big or small, is a voice that says "your life matters."

Thank you for being part of this fight for life, love, and hope. 💛