Continuing supporting Maya’s medical crisis

When Maya’s journey started on October 30th we had no idea the events that would take place.

With 3 different hospitals, 2 ambulance rides, one almost 2 hours away, she landed at Cincinnati Children’s hospital. Despite the extravagant efforts of the most amazing medical team made up of specialist and nurses, Maya Heavenly Alazar gained her angel wings on Monday 11/11/24 @ 6:23am. She was held by her mom, Feven as she sang her a beautiful song in their native language and her dad Alazar as she peacefully left this world and enter our Lord and Saviors arms.

Our fundraising efforts now transition to continuing to assist them with the significant financial burden of medical bills, funeral expenses and missed time at work as they continue to navigate this extremely difficult situation.

To help you understand here is a list of some of the treatment strategies

Presented to initial hospital after becoming unresponsive. Once stabilized was transferred by ambulance to downtown children’s hospital. Abnormal labs and abdominal ultra.

Surgery for intussusception (her intestines telescoped inside of themselves)

Once out of surgery and post op it was decided she needed to be sent to Cincinnati Children’s hospital for acute liver failure of unknown reasons.

Required intubation for ventilator support.

Placed on CRRT dialysis, 24 hour dialysis, here is the importance of what it can do…

Hemodynamic stability: helps maintain hemodynamic stability

Fluid and electrolyte shifts: helps avoid rapid fluid and electrolyte shifts.

Nutrition: allows for unrestricted nutrition

Waste removal: can filter wastes like urea from the blood

Fluid removal: can remove extra fluid from the body

Chemical balance: can help restore the right balance of chemicals in the blood

However to use this she has to be on a very specific type of medicine to thin the blood to keep it from clotting in the machine. After time on it, her body would not metabolize the medication needed.

She was then switched to aquapheresis. It only pulls off excess fluid. No waste filtration.

She was also on an oscillator ventilator. It provides rapid breathing rates with small tidal volumes to protect her delicate lungs.

Developed bilateral pneumothorax, both lungs collapsed. This occurs when air leaks into the pleural space, the area between her lungs and chest wall. She required a chest tube placement on both the right and left.

2 days later her abdomen continued to swell. She required another drain to remove the air and fluid.

She also had multiple iv access lines. Central line on the left chest area. A line on the right for arterial blood pressure and lab draws for blood gases. This line was removed and placed on her right ankle then her left ankle. These access points were temporary and needed to be changed because of vascular injuries. However the last one was difficult to be placed due to her excess swelling.

She was placed on Plasmapheresis to remove harmful substances like antibodies and abnormal proteins from the blood

Then was returned to the CRRT machine, without the use of the medicine she needed for clotting factors. Instead they ran blood to her, while the CRRT ran incase of clotting issues so her blood volume wasn’t in the machine incase of emergency. Attached to this very specific CRRT machine, she was hooked to a MARS machine. This is basically liver dialysis. The purpose is to remove protein-bound and water-soluble toxins from the bloodstream.

Not to mention the amount of blood products she received including blood, platelets, plasma and all the medications used to attempt to treat her.

In the end she was in multi organ failure. Despite all attempts, her body was unable to continue to sustain itself.

But why? Genetic testing had been completed early and her arrival however, results can take up to a week to get back as they are testing for every genetic disorder possible. Maya was found I have a genetic disorder called mitochondrial disease. Her specific type is the TRMU deficiency. This is caused by changes in the TRMU gene. TRMU is a gene in the DNA in the cell nucleus involved in supporting DNA translation in the mitochondria. Mitochondria are organelles within cells that generate chemical energy needed to support and sustain cellular functions. DNA translation is an essential step in creating functional proteins from genetic material. Without this process, it is not possible for cells to maintain proper functioning which can lead to disease