The State Committed Murder in Slow Motion
A father detained by ICE. A son left to die. And a system that knew exactly what it was doing.
The History of the AMDA: 1995 – 2024
This video provides a deep look into how the AMDA was founded by a family whose personal journey with Pompe disease led to 30 years of global advocacy and research.
1. Acid Maltase Deficiency Association (AMDA)
The AMDA is a registered 501(c)(3) nonprofit. Your contribution empowers their mission to ensure no patient or family faces Pompe disease alone while funding the critical research necessary to advance understanding and develop improved therapies.
2. The PAN Foundation (Pompe Disease Fund)
The PAN Foundation is a registered 501(c)(3) nonprofit that accelerates access to affordable, equitable healthcare by providing direct financial assistance for life-saving medication and insurance premiums.
No Parent Wants To Outlive Their Child
That is a primal fear that lives inside the ones we call mother and father. Memories of bringing them home, not knowing what to do, that door opening and everything old becoming new again. From rolling to crawling, and then from walking to running.
Time. Time that slips away far too fast.
Maher Tarabishi’s son, Wael, should have died long ago. It is, in all honesty, a testament to a parent’s love that kept him alive for thirty years. He is no longer here. He is dead, and his father is mourning in an ICE detention facility.
This did not have to happen.
I know the pain of a father watching their children die. Many times over. The experience of joy becomes a stain on your soul. You try to relive and remember, but everything is blocked out by the void left behind. I have heard the cries of a father whose child died before him.
That is something that stays with you.
Wael was born disabled and unable to sustain his life on his own. Doctors assured his parents that he would not live long and that they should prepare for the worst.
In spite of that, and out of love for his son, Maher proved everyone wrong. His son saw thirty birthdays. Lived thirty years. A labor of love that only a parent can give was bestowed upon Wael.
Now he is gone. Dead. No longer in this earthly plane. The cold, unyielding slate that is Immigration and Customs Enforcement, with full knowledge, removed the only lifeline Wael had. That choice sealed his fate.
The United States took the life of a disabled man who survived decades longer than expected only because of the strength and love his father had for him.
This shows a system wearing a papier-mâché mask cracking at the seams. Behind it stands an institution that feasts on human suffering. Every policy, every action, every single press conference represents a structure that destroys lives.
On October 28, ICE detained Maher during what should have been a routine check-in. No criminal record. No threat. No justification that could outweigh the reality that he was the only person trained to keep his son alive.
From that moment forward, the clock began to run out.
Wael was admitted to the hospital soon after his father was taken. Thirty days of hospitalization. Thirty days of decline. Thirty days of a body that had survived three decades only because his father never left his side.
Doctors tried. Nurses tried. Advocates begged ICE to release Maher on humanitarian grounds. They warned that Wael’s life depended on his father’s presence. They said it plainly. They said it repeatedly. They said it in writing.
Nothing changed.
Wael was transferred between hospita his condition worsened. Each move stripped him of stability. Each day without his father stripped him of strength. The medical staff did what they could, but they were not trained in the specialized care Maher had provided every hour of every day for thirty years.
This was not an accident. This was not an unforeseeable tragedy. This was a chain of decisions.
A father detained.
A son left without the only caregiver who could keep him alive.
A system that refused to bend even when a life was visibly slipping away.
In January, after weeks of decline, Wael died in the ICU.
He died without the man who had kept him alive since birth. He died because the one person who could save him was locked in a detention facility.
What could have been done differently? Everything.
Maher could have been released on humanitarian parole. ICE could have listened to the doctors. They could have listened to the advocates. They could have listened to the family. They could have recognized that enforcement without compassion is not enforcement at all.
It is abandonment.
A man who survived thirty years against every medical prediction died because the system removed the one person who kept him alive.
Once that decision was made, the rest unfolded exactly as anyone who understood his condition knew it would.
This is fkn BULLSHIT!!!! HOW MANY PEOPLE WILL DIE? HOW MANY CHILDREN WILL BE LEFT WITHOUT A FAMILY, AND OR DIE? WHAT THE FUCK IS IT GOING TO TAKE TO HAVE ALL OF THIS EVILNESS STOP????? .....