Help Jeffrey Fight for His Recovery

This fundraiser is proudly sponsored by the Proteus Syndrome Foundation to support Jeffrey Mejia Ortega and his family during a devastating medical crisis.

Our dear friend Jeffrey Mejia Ortega needs our help.

Jeffrey lives with Proteus syndrome, an extraordinarily rare condition affecting fewer than 200 known people worldwide. Those of us who know Jeffrey know how much he has already faced throughout his life—and how much strength he has shown through all of it.

Recently, Jeffrey underwent surgery to remove a meningioma from his neck. Following surgery, he suffered a devastating complication. Bleeding developed around his cervical spinal cord, causing a severe spinal cord injury.

Jeffrey woke up unable to move from the neck down.

He has since required a tracheostomy and ventilator support.

In a matter of hours, Jeffrey's life—and his mom Alicia's life—changed completely.

Right now, Jeffrey remains in the hospital surrounded by people fighting for him. His doctors, family, friends, the Proteus Syndrome Foundation, and specialists familiar with Proteus syndrome are working together to determine the best path forward.

And we are determined to give Jeffrey every chance we possibly can.

What happens next is why we need your help.

One of our biggest concerns is making sure Jeffrey can get the specialized spinal cord rehabilitation he will need when he is medically ready to leave the hospital.

We have been able to secure the most affordable health insurance currently available to Jeffrey. Unfortunately, that insurance does not provide the coverage he will need for the specialized spinal cord rehabilitation we are hoping to pursue.

To give Jeffrey access to this level of rehabilitation, we may need to obtain a significantly more expensive insurance plan that provides the necessary coverage. Even with better insurance, we expect there will be substantial medical, rehabilitation, transportation, equipment, and caregiving expenses that insurance simply will not cover.

This is one of the biggest reasons we need to raise $250,000.

If Jeffrey can come off the ventilator and becomes medically stable enough for intensive rehabilitation, we want to be ready.

We don't want to finally hear that Jeffrey is ready for the next step in his recovery only to discover that we can't afford to give him that opportunity.

We don't know what Jeffrey's recovery will look like. Nobody can promise us how much function he will regain.

But we don't want money or inadequate insurance to be the reason Jeffrey doesn't get the chance to try.

That is why we are asking for help.

Our goal is to raise $250,000 to help give Jeffrey access to the care he may need now and, in the months, and years ahead.

Funds raised will help with expenses including:

• A more comprehensive health insurance plan that can provide access to specialized spinal cord rehabilitation

• Specialized inpatient spinal cord rehabilitation

• Hospital and medical expenses not covered by insurance

• Physical, occupational, respiratory, and other therapies

• Medical equipment and supplies

• Medical transportation

• Accessibility modifications and equipment

• Caregiving and daily living needs

• Other expenses that arise as we learn what Jeffrey's long-term needs will be

And there is another part of this story.

Alicia has been at her son's side through all of this.

Jeffrey was the breadwinner for their family. Now, instead of working and supporting his family, he is fighting for his life and his future.

The Proteus Syndrome Foundation is currently helping Alicia with living expenses so that she can remain focused on Jeffrey. We will continue doing everything within our power to help this family.

But PSF is a very small rare-disease foundation with limited resources.

We cannot do this alone.

There are still so many things we don't know. We don't know how long Jeffrey will need the ventilator. We don't know what function he may regain. We don't know exactly what equipment, therapy, assistance, or modifications he will need in the future.

What we do know is that Jeffrey deserves the opportunity to fight for as much recovery and independence as possible.

That is what this fundraiser is about.

It's about getting Jeffrey to the right rehabilitation when he is ready.

It's about making sure Alicia can stay beside her son.

It's about having the resources to say YES when an opportunity for Jeffrey's recovery becomes available instead of having to say no because we can't afford it.

Jeffrey is part of our Proteus family. When one of our families is hurting, we hurt with them. And when one of them needs us, we show up.

Now we need more people to show up for Jeffrey.

If you can give $10, $25, $50, $100 or more, please know that every single donation gets us closer to our goal.

And if you can't donate, please share Jeffrey's story. Send it to your friends, family, coworkers, church, community, or anyone who might be willing to help.

We need this story to travel far beyond the Proteus syndrome community.

Jeffrey and Alicia are deeply loved, and they should not have to face what comes next alone.

Please help us raise $250,000 and give Jeffrey every possible chance to fight for his recovery and his future.