Jonah’s Journey with Adrenoleukodystrophy (ALD)

Over the past several months, our sweet Jonah has faced an incredibly difficult and confusing medical journey. We began noticing unusual changes in his behavior and personality—things that just didn’t feel like our Jonah. After multiple evaluations and several misdiagnoses, we finally received some answers following an MRI, which showed damage to the white matter in his brain.

We were told he had a form of leukodystrophy, a group of rare genetic disorders affecting the brain’s white matter. At first, we were given two incorrect diagnoses—Alexander disease and metachromatic leukodystrophy (MLD)—before finally receiving the correct diagnosis through genetic testing: adrenoleukodystrophy (ALD).

ALD is a rare genetic disorder that prevents the body from breaking down very long-chain fatty acids. This leads to a buildup that damages the adrenal glands and can sometimes cause cerebral ALD, affecting the brain. Jonah has both cerebral ALD and adrenal insufficiency.

After finally learning his true diagnosis, we were referred to Dr. Lund in Minneapolis, one of the leading specialists in ALD. During our visit, we learned that Jonah has an even more rare type of cerebral ALD that primarily affects the frontal region of his brain. The good news is that Jonah qualifies for a stem cell transplant—a life-saving procedure that can halt or slow the progression of this devastating disease.

The transplant team immediately began searching for a donor, and we are thrilled to share that Jonah now has a tentative transplant date of November 4th. We will be relocating to Minneapolis for approximately six months as Jonah undergoes the transplant and recovery process. He will be inpatient for most of this time. Both of us, Jonah’s parents, will be taking six months of FMLA leave to be by his side every step of the way.

This journey will be long and difficult, but we are filled with hope. Jonah is strong, brave, and surrounded by so much love and support.

Many have asked how they can support our family during this time. We’ve set up this GoFundMe to help with the many expenses that come with relocation, medical care, housing, meals, and lost income during our time in Minneapolis.

We’re endlessly grateful for any donations, shares, or messages of encouragement — every gesture means the world to us.

Thank you from the bottom of our hearts for walking this journey with us. Your love, prayers, and support mean more than words can express. Jonah’s strength continues to inspire us every single day, and with your help, we know he will overcome this.