Orland Park baby's treatment for rare genetic disease Barth Syndrome granted accelerated approval by Food and Drug Administration
Share and Follow

ORLAND PARK, Ill. (WLS) — A baby in the Chicago area is battling a rare disease and desperately needs a drug treatment for a better life. The drug has now been granted accelerated approval by the FDA.

The video in the player above is from a previous report.

The U.S. Food and Drug Administration announced Friday it will approve the Forzinity (elamipretide) injection that is currently used to treat an ultra-rare disease called Barth syndrome.

ABC7 Chicago is now streaming 24/7. Click here to watch

The FDA had previously delayed its approval in part because the sample sizes were so low.

The pharmaceutical company that produces the drug said it could have gone out of business without the FDA approval. For one family in Orland Park, that would have spelled disaster. They spoke with ABC7 last month.

In his short life, Adel Mohammed has already been through so much. He was not much more than a month old when he was rushed to the hospital in respiratory distress.

“We’re just watching them trying to intubate him,” his mother Nour Shaban said. “While they are trying to intubate him, he went into cardiac arrest. We were just in shock.”

Mohammed was diagnosed with Barth syndrome, an ultra-rare genetic disease that affects mostly males. There are only about 150 cases diagnosed nationwide.

Mohammed has been getting daily injections of elamipretide for months now.

“Even his pediatrician says he’s a miracle baby,” Shaban said. “He’s able to sit up on his own. Lift his head up on his own. He’s showing things he should be delayed with.”

According to the Barth Syndrome Foundation, without treatment, sufferers will exhibit muscle weakness, heart failure and delayed growth. Most early deaths happen in infancy.

After ABC7’s initial report, Stealth BioTherapeutics announced the FDA agreed to fast-track the process.

“While the FDA considers the resubmission a complete, class 2 response with a six-month user fee goal date of February 15, 2026, the agency has advised the Company that its planned goal date is September 26, 2025,” the press release said.

On Friday, the FDA made the official announcement on the drug’s accelerated approval

Copyright © 2025 WLS-TV. All Rights Reserved.

Share and Follow
You May Also Like
World's tallest bridge opens to traffic in China

China Unveils the World’s Highest Bridge, Now Open for Traffic

IE 11 is not supported. For an optimal experience visit our site…
Terrifying moment couples cheat death when elephant flips their canoes

Couples Survive Scary Encounter After Elephant Capsizes Their Canoes

This harrowing incident captures the moment when two couples from the UK…
Trump vows Border Patrol agents will take ‘no nonsense’ as feds march into downtown Chicago

Trump Promises Border Patrol Will Stand Firm Against Nonsense as Federal Agents Head to Chicago’s City Center

Federal agents clad in full tactical gear took to the streets of…
Inside the gut-wrenching 18 days that redefined JD Vance's destiny

A Dramatic 18-Day Journey that Transformed JD Vance’s Future

Walking slowly into the Oval Office, JD Vance locked eyes with Donald Trump.…
Bad Bunny will headline Super Bowl 60 halftime show

Bad Bunny Set to Headline Super Bowl 60 Halftime Show

Puerto Rican artist Bad Bunny will headline the Super Bowl 60 halftime…
Charlie Kirk shooting suspect to appear in court

Suspect in Charlie Kirk Incident Scheduled for Court Appearance

() The man charged with killing conservative activist Charlie Kirk was expected…
Trump and Netanyahu say they've agreed to a plan to end Gaza war

Trump and Netanyahu Announce Agreement on Plan to End Conflict in Gaza

The plan does not require people to leave Gaza and calls for…
Feds feel 'subtle' change about agents' presence in Chicago

Federal Agents Perceive ‘Subtle’ Shift in Chicago Presence

CHICAGO () The increase in federal immigration agents and officers patrolling Chicago…