Niketa Brown - AUSTRALIA

Niketa comes to us from Australia! The above photo is a picture of Niketa (left) in 2007 - right before ROHHAD hit. She was and still is a very active child. She loves to dance. But in 2008 something happened and Niketa change dramatically. She suddenly started gaining weight and her breathing was getting terrible. She ended up in the hospital ICU for over 11 months and wasn't allowed to come home for more than 2 hours a day and had to be with her nurse the entire time.

Finally in June 2009, Niketa came home and everything was changed. But she was finally able to start seeing her family and spending time with them and not have nurses surrounding her. This was Niketa's first night home in her own bed with all her machines.

A few months later Niketa had to go back in to the hospital for her lung function testing. She is in often for her MRIs and CT scans and meets regularly with all of her doctors.

Although Niketa has ROHHAD she is not letting it slow her down. This girl is still out there dancing and competing. She even won first place in her school dance competition!

She has also gotten in to modeling for sleep study commercials! :) She's probably the best model I've seen with wires and straps! She definitely keeps a great attitude about it.

This is Niketa during her last sleep study. Again, I still don't know how they expect the kids to sleep and give results with wires and tubes all over them.

Niketa recently had to have a CT scan which was more difficult than it normally is. A ROHHAD child has a tendency to have "frozen" limbs - that's what we call them. They suffer from thermal dysregulation which causes the limbs to be very very cold. This doesn't help the veins when trying to get a needle in them for an IV. The vessels constrict making it too tight to get to. Finally they did the CT without the contrast --- we are still awaiting results.

We love you Niketa and can't wait to see your next recital in photos! Keep up the great work mom, you're doing awesome! Lots of love!