I suffer from a condition called ROHHAD. ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system. As the name suggests, the key features include dramatic weight gain over a six- to 12-month period in the first 10 years of life, followed by hypothalamic dysfunction, dysregulation of the autonomic nervous system, and alveolar hypoventilation. Children with ROHHAD appear to have normal growth, development, and general health prior to onset of symptoms. The cause of ROHHAD is currently unknown. Treatment varies based on the signs and symptoms present in each person.
My daddy love me more than anything in this world. He give me everything he possibly can at any moment but my family needs your help in this moment. By donating you will be giving me a chance to grow, a chance at a good and loving life and a chance at a future. Please donate. Anything you can give is helpful.
Banner on his 3rd birthday in February, Started quickly to gain weight with no reason. We had been dieting and cutting all sugar carbs, gluten free... nothing was changing. In fact he kept gaining. We booked with an endocrinologist (who we ended up not liking) who told us to "keep dieting and I will see you for a follow up in 2 months." so We got a referral to Hasbro endocrinology instead. They immediately saw a problem and ordered a slew of tests. Rohhad was not discussed at this time but in the notes from Dr to Dr We saw that it was on the table. So His mother got more info from Dr Google, (bad idea) and from then on We have been praying the MRI would come up with something. An operable sist, or tumor, just something... an answer. Banners mother woke up a Tues morning this September and thought Banner was talking in his sleep, She didnt know why She went in, but when She did he was gasping for air. She turned the lights on and he was blue and limp and unresponsive. We called 911 and spent 15 days in ICU. 8 days intubated. From a common cold. That's what caused him to not breathe. His fever was 106 ..so they believe he also had a seizure. We are home and sleeping with a bipap. For now, this is our new normal... Banners weight has plateaued and we are keeping it together. We all feel lucky. He wakes up every morning smiling and runs and plays and that makes me feel lucky. What we are most sad about is what’s in our future, We hold onto the fact that he doesn't feel "sick" and we thank God for small favors. The boy who saved us, and put back together Our hearts, that was so broken I didn't think I would ever love again...
Thank you all so very much for your time reading about this disease ROHHAD and a little into our Life’s with Banner.
His most recent stay was in Boston Children’s Hospital. He spent 189 days total had two surgeries and lots of sicknesses and infections. He is now home and we are trying our best to keep him happy and well.
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