Support for Jeremys Funeral Expenses

Hello friends, family, neighbors, Oregon or anyone! My Name is Julio Morales and I’m fundraising for my 6 year old brother Jeremy Morales. Since his birth, him and I have been very close I can remember all the times we would play together even with the 20 year difference he was always a corner away from a surprise. One of my best memories with him is a video I have of him and I playing peekaboo and he just started dying of laughter. He was always an active boy he could run for Miles without getting tired he was the light of the family as he was the baby. Up until about a year ago he started with a lot of urination and fevers which was odd. No infections or viruses. Increased weakness and lethargy. They would take him to the doctors and do all these test and everything would come up “Normal”. Then the weight gain started. from size 5 - 14 and he was only five and gained lots of weight. He was always hungry and my parents could tell something was off. He was taken to Randall’s in March was there for 8 days. Found out his sodium levels were 74+ which is very high. He was discharged and sent home to rest until he got worse. He was sent to Dornbecher for emergency this would be a 10 day stay but this time all labs, images, test were done. Then I got the call from my mother saying they have a diagnoses. The word was 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 in kids usually starts at 1.5 in age but for Jeremy signs started at 4 years old. (which controls involuntary actions like breathing and your heartbeat) and the endocrine system. I work as a Paramedic and have small medical knowledge but I’ve never heard it before the more I looked into it and the more I heard from the doctors. It’s so rare there have been about 200 cases worldwide and due to the nature of the syndrome it’s terminal and a life expectancy is unknown but most kids with this don’t make it to teens. Once we had a diagnoses we assumed there could be a treatment but there is no cure. they can manage the symptoms and hope for the best. He was sent home with a plan and over the last few months unfortunately he has gotten worse. He had 3 of the 4 major criteria onset obesity, hypothalamic dysregulation , autonomic dysregulation but his breathing was in tact. Until a few months where his breathing started giving out. He was hospitalized last for 30 days just managing his breathing. He then needed a mask to sleep allowing him to get oxygen and expand his lungs something normal people just rely on he forgets to breath due to the disconnect in his body and the syndrome. A boy that used to be able to run miles can’t walk more than 50 ft without getting exhausted. All the things we take for granted are taken from him in a blink of an eye. I’m making this gofund me due to todays event. In the morning my brother was in the hospital and went to use the bathroom and went unconscious and had a seizure possibly due to no oxygen reaching his brain. Due to this event and his deteriorating state he needs a tracheotomy which will need surgery to place the ventilator permanently. the goal is to give him a better quality of life and with the time we have which is unknown and only up to God himself. Funds will be for my family to be able to pay rent since my family will take time off work. Used for medications, treatments, possible caregiver that can help take care of my brother a day a week. As we prepare for the surgery we know what waits for us won’t be easy so we ask for anything you can help with. The syndrome's rapid progression poses significant challenges for affected children and their families, necessitating comprehensive medical care and support. Ongoing research is crucial to better understand and manage this rare disorder, and raising awareness is essential to garner support for affected individuals and their unique medical needs. So thank you.