You're in the ER, waiting, heavy footed as the doctor gives you the prognosis. You can't even begin to believe the words coming from his mouth...your child is one of only 80 in the world to ever recieve the diagnosis.
Short for rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation.
The victim's name is LJ, short for Luis Junior. And he is my younger brother at 10 Years old. But junior he is not...for ROHHAD creates rapid weight gain. Very Rapid. He currently weighs 330 pounds. Even getting out of bed is a 10 minute process. He is forced to watch other children run and play...explore their worlds. He never got that chance. He NEVER, will have that chance.
If you would like to learn more about the disease, you can visit it's Wikipedia Page. It's whole of 4 paragraphs written on the subject. Little to almost nothing is known about the Syndrome, other than that it is always fatal. This came as a significant blow, after he was also diagnosed with severe autism just a couple years earlier. The odds of both happening, to the same child, are 1/14000000000.
ROHHAD comes in multiple stages, with the end being the respiritory problems. The body can no longer effeciently regulate Oxygen and Carbon Dioxide levels in the body. This ultimately always results in CO2 Poisoning. This is the stage he is in. He can only manuever long distances with the help of a wheelchair, can't go to the bathroom without assistance, and needs to be hooked up to an intricate hospital bed every time he goes to sleep. Heart monitors, Oxygen monitors, CO2 monitors, oxygen mask, pulse reader, you name it...he's wearing it. We had a Trach put into him to try and help...but it merely prolonged the inevitable. It was ridden with complications from the day it was put into him, until he could no longer take the ridicule, the discomfort, and pain.
He ripped it out.
My parents rushed him to the hospital in shock, and were given an ultimatum. Regardless of whether we trached or not, he was going to die. They gave him 2 years, maximum.
And that's where my story brings us. My parents decided they wanted his last days on Earth to be filled with happiness and comfort, so they didn't have him re-trached. He could live his last couple years the best way he could.
He is now on Hospice care, and we will shortly be having a small local benefit to raise money, and awareness, for both this life-taking disease...and his quality of life. We are attempting to raise enough money to have an additional specialty bathroom, bedroom, wheelchair lift, and medical equipment to make sure he can be as comfortable as possible until he leaves us. However...we come from a small town in Mass and there's little to no publicity aiding them.
So that's where I stepped in. My parents have no idea i'm doing this, and so I want to surprise them. I want to show them that there are many good people out there willing to help. Willing to donate, and give them hope. To help bring warmth back into their hearts...to give my brother back the life ROHHAD stole from him. Even if only for a moment...we want to see him smile again.
Help us give him a gentle goodbye. God bless, and thank you.
- Christopher Fangiullos
- Kelly Ford
- Alison King
- Kelly Ford
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