Denika - ROHHAD and GANGLIONEURBLASTOMA CANCER

We first met Miss Denika at the end of summer last year. I spoke with her mom, Trina, quite a bit and discovered Denika was exactly like Miss Haven. She had just had surgery to remove her Ganglioneuroblastoma Tumor in the abdomen and her doctors were now trying to figure out ROHHAD.

Denika was flown from her hospital in Newfoundland to Toronto for evaluation.

Here is her private plane. Once evaluated in Toronto I was amazed to receive an email from her Endocrinologist asking for advise and info on what Haven had been doing. I immediately sent her an email back with a short synopsis of our treatments and the plan. Then I also encouraged her to speak with our doctors and discuss the best options for Denika. The next day our doctors called to ask if it was ok to speak to them on behalf of Haven. ABSOLUTELY. Next thing I knew Denika would be getting a port in place and would begin IVIG treatments.

Here is Miss Denika at her birthday party. She is so beautiful. She has been doing IVIG for a few months now. I keep in touch with her mom as best as I can. Life gets extremely hectic when you're running back and forth to an Oncology office for treatments. But Denika is doing great and I love seeing her photos.

We love you Trina and Denika.....

Josh Wooten - ROHHAD

This is Vanessa (Josh's mom) and Josh. Last summer Josh received pacers in his chest to help him be able to stay off the vent longer. By the Fall he'd built up his body enough to be able to go out and hunt with his dad. We're extremely proud of Josh. He's done a great job.

In late January 2010 Josh spent quite a bit of time in the hospital. Constantly running fevers and having intense chest pains. Multiple CT scans and x-rays. Definitely not a fun way to start off the year.

After all the testing they were finally told he had H1N1 and double pneumonia. Keeping in the hospital for a long time. It's extremely hard when they get sick especially something as horrible as these.

Josh has recovered very well yet is still constantly hit with what "normal" people would call a cold that is entirely different for him. This year he, along with his family, welcomed his new nephew. Baby is just adorable. Josh is an amazing boy and an inspiration to everyone. Love to his family.

You can read up on Josh at his site: JOSHUA WOOTEN