The fascinating case of Haven Fowler details her parents’ fight to be heard about the health of their young and beautiful daughter. Although the doctors continually told Misty and Kris Fowler that nothing was wrong with their daughter, they continued to push to find the answers they so desperately needed. Not only is Haven’s condition rare, but the symptoms can appear so common and normal. Here is a short list of her symptoms and a brief version of the path they took to get a final diagnosis.

 Some of the symptoms he showed over time:

• Haven (born in 2004) was never really sick as a baby. She was always spunky and healthy.
• Parents realized their daughter was having a shocking and unexplainable rate of weight gain around the age of 2 ½. There had been no change in her diet or activity.
• She went from 20 lbs to 43 lbs in one month. – Doctors ran blood tests for thyroid problems, but it came back normal. The parents were instructed to cut back on her food and set a diet for 3 months.
• By her next appointment, she had gained another 15 lbs. – Doctors ran MRI to see if she had a tumor on her pituitary gland which maintains metabolism. Came back negative. She was fine. The doctor told the parents it wasn’t a medical issue, it was a parental one. They needed to watch her diet. They had been so this was frustrating and they knew something was wrong.
• Haven would have nightmares and be sitting in bed with her eyes wide open and screaming. Then one night she said to her mom as she was in her nightmare, “little girl in my bed. Bleeding and smiling at me”. This made her mother REALLY scared. – Doctor said this was no cause for alarm and she will grow out of the night panics.
• Parents found her one night on the couch with a bunch of food next to her. They realized she was getting up, sleep walking and eating. – For 5 months Haven’s parents took turns sleeping next to her with a ribbon tied to themselves and their daughter.
• Few months later her mother heard her snoring in a strange way. Haven wasn’t a snorer. She went in to find her stiff with her back arched and foam coming out of her mouth. 911 was called and she was rushed to the hospital. – Dr Cook, MD, did a CT scan because he believed she may have a tumor near her kidneys. He found a nueroblastoma which is a tumor of the nervous system or adrenial gland. It is an aggressive cancer that spreads quickly. An operation was scheduled.
• Following surgery, nothing changed. Haven was still gaining weight and sleep walking. Her parents were at a loss, but continued to search for answers.

 Final Diagnosis:

• ROHHAD : Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation- a rare disease that impairs the brain function of Haven. When a tumor would normally form in a person, the immune system would attack it. In Haven, her immune system went wild and not only targeted the tumor…but also targeted her brain. Her hypothalamus which controls appetite and sleep was under attack. It could cause her to stop breathing.

 What is ahead for her:

• There is NO cure for ROHHAD.
• Treatments are literally trial and error.
• Haven undergoes chemotherapy to suppress her immune system and attempt to turn off the autoimmune process.
• Her weight has stabilized and her family is optimistic.
• Only 50 known cases have been described.

Haven is such a sweet little girl. As she heads off to school, it is nice to know that her parents know what battle they are taking on. Not knowing and being scared is never easy!