Hi everyone,

My name is Jordan Karle. I am mother to my 18 month old son Jaylen who lives with a rare and fatal disease called Barth syndrome that effects only 150 people in the US! At 1 day old Jaylen had a 40% chance of survival, was in severe heart failure and faced a future of unknown. I was preparing myself to lose my baby before he even had a real chance at life.

At 1 month old, we were faced with a decision— On March 12th 2024, We got the opportunity to start elamipretide — an investigational therapy for the treatment of Barth syndrome. Jaylen had a failing heart, long odds & nothing else was working despite the 24/7 care from his medical team, several medications, facing an LVAD & a heart transplant. I immediately said “yes”, and he began elamipretide. After ONE MONTH

(two months total in the hospital fighting) on this medication son left the hospital with not only the heart he was born with — but a NORMAL functioning one. My boy was saved.

Recently, the FDA has denied my baby this life saving therapy — not because it doesn’t work, not because it’s unsafe but because bureaucracy hasn’t caught up to the reality we live in.

Imagine this: Your child is dying, there is only ONE therapy that has saved & changed their life in ways you couldn’t believe was possible & now it’s being ripped away from us? Which means — I will have to slowly watch my baby’s health decline, I will have no therapy available to keep him alive & we will live the life we once begged to escape.

I am raising money to help with travel expenses to go to Washington DC — to FIGHT & URGE the FDA to reconsider their decision. My baby’s life and the life of his “Barth brothers” are on the line. This isn’t political. It’s not exaggerated. It’s personal. Every $ counts. I can’t personally thank each and everyone of you but it means more than you will ever know. Please help me fight for my baby. He deserves this chance.

Thank you! #approveelamipretide #saveJaylen