Two years ago almost to the date Charli was admitted for what we thought was just a bladder infection gone wrong. That night we were woken by the sounds of many alarms and people rushing into the room. Suddenly her oxygen was dropping as was her heart rate. We stayed a few days longer and were sent home with oxygen, monitors, and lots of questions.

Fast forward two years later and we have seen every specialist you can think of. From endocrinology, cardiology, pulmonology, neurology, nephrology, etc. We have had test after test , blood work after blood work, and have finally gotten a diagnosis .. but no plan .. and no cure.

Charli has been diagnosed with ROHHAD. There are around 300 cases world wide meaning outcomes, treatments, and advice are little to none. The outcome in many is scary and the time frame is very unknown.

We still have more questions than answers. However we’ve been presented with an opportunity to visit a clinic at children’s in Chicago , that speacilizes in her diagnosis. Charli will be admitted there for a week and from what we’ve been told it will be far from easy. From testing to labs to everything in between. However, everyone involved in her care is hopeful this will provide us with a plan and some form of hope.

With this opportunity comes expenses we aren’t prepared for. From traveling there to staying there. We are humbly reaching out for help. Any funds raised will go to getting her to Chicago ❤️ We appreciate any and everything in advance.