Soon after Dalia’s* 11th birthday, life as she knew it completely changed. In the span of a few weeks, she went from being an independent, energetic kid who loved running and dance, to needing night-and-day monitoring from her parents, having to give up most physical activity, and spending countless nights in the ER.

Dalia’s symptoms were confusing to doctors: sudden episodes that sounded like blood flow might be blocked to her brain or heart, but showing no sign of a problem on imaging. Only Dalia’s pediatrician, the first person to notice signs that something was wrong, encouraged her parents to keep fighting and searching for an answer. That answer might now be within reach.

Over the next eight months, Dalia’s episodes continued – sometimes causing symptoms of mini-strokes, or coronary vasospasm, while other times only cutting off blood flow to local areas of her body. Dalia’s parents found themselves in a terrifying position: unable to prove to doctors that she was in danger, as her symptoms increased but left no trace on tests.

In the words of Dalia’s parents, it was “every parent’s worst nightmare that you never knew you had.”

ER docs and specialists, unable to find an explanation, reassured the family that she must have something simple, like migraines, or anxiety. But Dalia’s parents sensed something more serious.

By piecing together clues from Dalia’s symptoms and the family’s history, they realized that Dalia is the third generation in the family to show an unusual set of wider, lifelong “mystery” symptoms throughout the body, including fragile blood vessels. Knowing that those earlier family members suffered fatal and excessive bleeding, Dalia’s parents wondered if these new incidents, left untreated, might be pushing her closer to a dangerous hemorrhage.

Dalia needs a diagnosis, so she can be connected to one of the few specialists worldwide with expertise in her genetic issue. But rare diagnoses can take years – and Dalia needs care now.

So her family has spent the last year creating that care: studying medical literature, identifying her triggers, observing and testing methods to keep her safe, and managing her symptoms around the clock.

They have paid out of pocket for complex medical imaging, consults with foreign specialists, and medical equipment. They have crafted their own medical equipment where none existed. They have slept in shifts to care for Dalia, physically moving her all night long, and helped her to sleep upright in chairs during her most dangerous period.

These things worked to calm Dalia’s symptoms. But to do all this, Dalia’s mother had to stop working and care for her full-time, and the family’s savings have been wiped out.

Finally, this February, Dalia’s family reached a breakthrough. After meeting with a geneticist specializing in molecular disorders, he confirmed that Dalia’s complex case seems to be not just a problem with the structure of her body, but with her cells themselves. If the tests he recommends find the genes involved, it could finally open the door to the right specialists and treatment.

We are a group of friends who have been following Dalia’s journey and supporting her family over these long months. We’ve seen her find quiet, creative ways to cope with experiences no kid should have to - when what she really wants is to run, dance, and play.

Now we’re asking people to fund the critical next steps in Dalia’s care and help her family recover from the cost of getting her this far.

Please give what you’re able, so Dalia can finally get treatment and be a kid again – and shed light on a condition that might affect others out there who are still struggling and searching for an answer for their symptoms.

**From Dalia's family: We know not everyone is in a position to donate. Many of you are dealing with your own health issues and costs. If you have a Facebook page or other networks, we would be so grateful to anyone who could share Dalia's GoFundMe. We appreciate your help, as well as your prayers!**

Contributions will go toward:

- complex genetic testing

- visits to out-of-area specialists

- equipment & medications not covered by insurance

- helping the family rebuild some of their losses

Thank you!

*How Dalia chose her name for this fundraiser

To protect the family’s privacy as they go through this, we’re using pseudonyms for this fundraiser. Since “Dalia” loves music, she chose this name in honor of Dolly Parton.