PLEASE HELP 'STAMI' FIGHT ADEM

On Feb 20,2024, Our son Stamwulf, who we call 'Stami', suddenly fell unconscious while asleep, after not feeling well the day before, and was rushed to the local emergency room, where doctors decided to take him by life-flight to Sunrise children's hospital for emergency treatment, not knowing what was happening to this otherwise happy, healthy six year old who had only been sick with a cold one time in his life, and that was several years before. After being put into a medically induced coma in order to intubate him on a life support ventilator, doctor's ran so many tests over the next few days, it was hard to keep track of them all: spinal tap, MRI, CAT scan, blood tests, viral and bacterial tests, etc.

After almost a week, we received the devastating news that our son had massive swelling of the brain and spinal cord, a rare but sometimes deadly condition called 'Acute Disseminated Encephalomyelitis' or ADEM, is an immune-mediated, inflammatory, monophasic, demyelinating condition that affects the white matter of the brain and spinal cord. As a rapidly progressive post-infectious encephalomyelitis, ADEM is characterized by demyelination in the brain and spinal cord

as a result of inflammation following infection or immunization.

How could this happen? our son was perfectly healthy the week before, helping other students in his class with reading and playing Minecraft at home in his free time. The only un-routine thing being the recent vaccination shots he received prior to getting sick.

A quick Google search revealed the truth...this devastating condition is either triggered by a viral / bacterial infection right before hospitalization, or a recent VACCINATION.

With no response to known treatments, Stami was again taken by life-flight, this time all the way to Utah, to primary children's hospital, a level-one trauma center with the best specialists in this part of the country, to undergo the last chance to save him, a process called 'plasmapheresis' where the blood is taken from the body and filtered, then returned with new white blood cells, to try and get the immune system to fight with, instead of against, our little boy. He would receive five rounds of this therapy, while being continually tested for every possible viral and bacterial infection on earth.

In the hours after receiving the first treatment on Feb 29th, our son started to open his eyes and was looking as if he was going to come out of the coma he had been in for several weeks by that time.

Unfortunately, late that night, our son's heart stopped after being thrown into an erratic pattern that was present for several days before. He was immediately given CPR and other life-saving measures for several minutes. They were able to bring him back and get him breathing again, and also discovering the cause of the erratic heart rate...the pik line in his carotid artery, for the plasmapheresis treatments, was too deep and was touching his heart. After correcting the position of the line, his heart rate went back to normal, but he now had a collapsed lung and would require several breathing treatments daily in his ventilator to repair the lung.

Tests continued, but with no visible improvement, doctors told us our precious 6 year old had severe brain damage on the MRI and would not likely ever recover...he was brain dead. We discussed the options of donating our sons body parts, so another child could live on through him, but quickly decided that being completely paralyzed, the only sign that he could give us, a single tear to the corner of his eye when we talked to him, was enough for us. We informed doctors that we believed he was 'in-there' and was not brain dead...he just couldn't communicate with us all.

Doctors decided to hold a conference with us to explain the severity of his condition, maintaining that his condition was that he would pass if removed from life-support. It was agreed that we would meet in one week to see what direction to go, as understandably, the hospital could not just keep him on life support indefinitely, in the Intensive Care Unit, which

receives critically injured children hourly from several surrounding states by life-flight crews.

In what can only be called sheer determination and a will to survive, Stami started showing everyone that he was absolutely in-fact, trapped in paralysis, but fighting his way out. What started as a mere movement of a muscle in his chin, became a mouth moving, an eye twitching while closed, him sustaining his heart rate without the atropine that doctors thought he wouldn't live without, many more tests, to the CDC and groups of the country's top experts looking at his case, stumped at his presentation of what they had never before seen...a child without a clear diagnosis, showing symptoms of several forms of ADEM, AFM, AHERN, etc...but against all odds, fighting harder than could be imagined from a small boy so critically ill.

On March 26,2024 after going in for a full body pet scan to rule out cancer, and a full body MRI, Stami returned to his room at an alarming 34 degrees Celsius, so cold to the touch that he felt frozen..he was immediately put into a bear-hugger device to try and bring his body temperature up to normal. As we all stared intently at the monitor, showing his core body temperature, which only went up 1 degree after 20 minutes, everyone was astounded to look down and see that Stami had opened his eyes for the first time...this was the beginning of his next journey, getting one facial nerve back after another, as his body repaired the myelin damaged nerves, brain stem and spinal cord.

Stami is still in a coma-state, able to open and close his eyes, and communicate through facial movements, but is still paralyzed from the arms down, has a tracheotomy / ventilator, feeding tube, etc.

There is a long road ahead for this little dude, but he is showing everyone that he isn't giving up, and fights harder everyday to get out of the prison he's in.

UPDATE: Stami is currently waiting for a bed back in Las Vegas at a long term rehabilitation center, but will face several years of intense therapy to return to 'a normal life'. Our goal is to bring him home so he can be with his 3 brother's, where his dad will care for him daily and his mom will be going into a RN program.

The future expenses for us related to Stami's care include specialized transportation, medical bed, ventilator, doctors appointments at various hospitals around the country, and numerous other costs not covered by insurance. We have no idea what the true amount will total, but surely in the hundreds of thousands (not including current hospital bills which are astronomical)...we are seeking only what we foresee as the cost to bring him home from long term rehab to be with his family 24/7, as the rehab only has visiting from 8am-8pm, which is going to be very challenging with a toddler and 2 other kids in-school.

ANYTHING is truly EVERYTHING!!! We are hoping Stami's story reaches millions of people and that collectively we can cover these costs..there is no amount too small..$5 is gas, $10 is diapers, $20 is nutritional formula, $100 is a used wheel-chair.

And above all, please keep Stami in your prayers, as he can use all the good energy we can give him.