Help Baby Luna

I am starting this fundraiser for a friend, Robyn Grogitsky-Ramirez.

This is her story, in her own words:

In April 2019, my daughter Luna (then, just shy of her 3 month birthday) was diagnosed with cystic encephalomalacia, hydrocephalus, & seizures. Before these diagnoses, we had NO IDEA our daughter was anything but a perfectly healthy child. We had an healthy amazing pregnancy, a beautiful natural homebirth with no complications, and almost 3 months of bliss with our daughter before discovering these devastating diagnoses. We had noticed some weird eye movements that brought us to the emergency room for possible seizures. There, they did all the typical testing (no genetic testing yet) that comes with these diagnoses with all the results coming back as normal. We have no answers as to why this happened to our daughter or what caused this devastating brain damage. We’ve been told it’s just a freak occurrence, a once in a million happenstance. *They think* it happened at or right after conception. But it’s really just that they don’t know. 

In April, when we were discharged from the hospital, we were told Luna had only hours-days to live. We were told to take Luna home to die. We were told the pressure in her head was inoperable and would be fatal due to the vast amount of fluid filled cysts she has in her brain- that they wouldn’t be able to connect them to shunt the csf- that even if they could shunt some, the remaining fluid/pressure would shift, putting too much pressure on her brain stem, killing her instantly. 

We took her home and after she continued to fight to stay here with us, we got a second opinion from Boston children’s hospital. Heartbreakingly, they only confirmed that they as well would not operate on Luna to relieve the pressure building in her head. We also were then denied Medicaid so hospice never came and we were utterly on our own, NO MEDICAL TEAM AT ALL   so we made the decision to pack up our lives and move back to our home city of Las Vegas to be closer to our friends and family for support. (We thankfully now have hospice care for Luna in Las Vegas )

Luna has completely proven the medical community wrong as she’s continued to thrive and survive for 4.5 months longer then her original prognosis. We were told she wouldn’t progress neurologically, socially, developmentally & while she is delayed in some areas, she continued to do new things (like smile, laugh, babble, put her hands in her mouth, pull at her knees/feet, play, rollover, track us, respond to us, etc.), all things they said she would never do (until just recently). We could not be more proud of her. She is so strong and so brave! 

But 5 weeks ago Luna started declining and having break through seizures that lead us back to the hospital. These new seizures were causing cyanotic episodes that were by far the scariest thing we’ve experienced with Luna so far. We are at the max dose of her Siezure medication and have now started adding oral cbd to help control the breakthrough seizures as it seems to work synergistically with the medicine. 

I’m constantly wondering how can this be happening to us? To Luna? We only just became parents a few months ago. Our whole world has been turned upside down. We are so heartbroken and scared. We feel totally alone and betrayed by the medical community. I wonder how can there not be a surgeon out there who can help my daughter?! It seems that the only children who don’t get helped with Luna’s conditions are those in 3rd world countries with no access to modern medicine. I feel like we’re the only ones who have been given this diagnosis where no one will help us. 

Please help us make the rest of Luna’s life amazing and memorable. Your gifts/donations will allow us to focus on loving Luna and giving her the best life we can for however long she will give us 

The money would be put toward:
Luna’s medical expenses 
Luna’s therapies (reiki, chiropractic, cranio sacral therapies, energy medicine, essential oil therapies, and other alternative therapies- these are the tools we believe have kept Luna with us for so much longer then her original prognosis)
Getting another opinion on surgical interventions 
Travel expenses if we have to travel for such treatment.
Living expenses 
Diapers/wipes 


Thank you everyone. Please share.