Ezra’s Fight Continues

Update 4-15: Ezra ended up needing a new shunt placed to help regulate pressure and fluid in his brain. The surgery was a success and he is expected to be discharged home today!

Update 4-14: Ezra’s initial trip to Boston went as well as possible and his surgery was a success. Doctors were able to remove the original shunt and cyst walls and the EVD catheter showed proof of stable pressures and was able to be removed. After about a week Ezra returned home to be with his family.

Over the past couple of days Ezra had developed a really large fluid pocket on the side of his head. Doctors decided it was necessary for him to return to Boston and have it drained. Once it was drained he was able to return home, but on their drive back Ezra projectile vomited, something he had not done since prior to his recent brain surgery. Poor buddy is back in Boston Children’s Hospital and is under observation awaiting news on if the pressure in his brain has increased again. Please continue to keep Jake, Alexis, Ezra and their entire family in your thoughts and prayers as they continue through this nightmare of a journey. If you have the means, please consider donating as expenses continue to accrue and their hospital stay begins once again. Stay strong and keep fighting little buddy, we all love you!!

UPDATE 3-28 #2:

Ezra is out of surgery and did great! He has a long recovery ahead, but is resting comfortably now ❤️ The Vooris Family is so grateful for all of the moral, emotional, and financial support you have all provided during this tough time!

UPDATE 3-28:

Ezra is heading in for brain surgery today. He will have his old shunt removed as the cyst walls have collapsed and it is non-functioning at this point. The cyst will be removed and a catheter will be placed to monitor pressures within the brain to determine need for a new shunt. Please keep Ezra and his family in your thoughts and prayers as he undergoes major surgery this morning!! Send all your love, prayers, and good juju their way!!

UPDATE 3-27:

From Alexis:

Best news we’ve heard in a long time.

We just spoke to the primary neurosurgeon here at Boston, and they think the shunt may be clogged or malfunctioning in some way. They still have to look at more imaging, but they *think* they may be able to get rid of the shunt and pop the cyst. They’ll most likely be doing surgery tomorrow.

They said he could eventually end up needing another shunt later on down the road, but they don’t really think he needs it.

UPDATE 3-26:

Ezra is on his way to Boston!

Hi everyone,

My name is Maria and I am starting this gofundme on behalf of my dear friends Alexis and Jake and their sweet boy Ezra. I met Alexis when I was paired to be her infusion nurse when she was pregnant with sweet baby Ezra. I have fallen in love with their family of rambunctious boys held together by the best Mama ever. I stand for everyone when I say I cannot think a family more deserving of our love and financial support during this tough time.

In March of 2023 Ezra was admitted to Albany Medical Center multiple times over the course of a month with unexplained neurological symptoms and vomiting. During this lengthy stay, Ezra was found to have increased cerebral spinofluid causing the pressure to increase in his brain and make him very sick.

As suspected since nine months, Ezra has since been diagnosed with Neurofibromatosis, a condition that can cause production of noncancerous tumors in multiple areas of the body. After recent scans, Ezra has been found to have some small tumors on his optic nerves and on his brain. The latest thought by the medical team is that although it is a rare complication, Ezra is producing extra CSF due to neurofibromatosis.

Sweet Ezra has undergone multiple spinal taps to read and decrease pressure on the brain and has also been started on a medication to slow the production of CSF. Despite these efforts, Ezra continues to go in and out of the hospital with unexplained increases in CSF which bring on sleepy spells and projectile vomiting. Ezra already has one shunt in his brain that was placed last year in a cyst thought to be coincidental. Now the talk of a second shunt is on the table.

The team at Albany Med has exhausted all resources and it is time for Ezra to move on to Boston Children’s Hospital for a second opinion. Ezra’s parents will have the chance to meet with Neurofibromatosis specialists and determine the next steps to get their son back to his silly, sweet, wild self.

The funds from this go fund me will help support Alexis and Jake as they incur travel and living expenses while in Boston. Additionally Jake has been out of work and Alexis is a stay at home Mom to her 4 boys. This money will help them stay afloat while they go to the ends of the Earth to save their baby boy.

Any and all help is greatly appreciated!