As much as I've tried to avoid this, we officially have no other choice.

On March 10th, 2020, our amazing little man Mason was born. Healthy as can be, but little did we know he had a genetic condition called X-Adrenoleukodystrophy. A condition that affects the adrenal glands as well as the brain's development if it ends up being cerebral. Earlier this year, we found out he does in fact have cerebral X-ALD, and it is progressing.

Our boy has gone through sedated MRIs and routine bloodwork since he was born, on top of daily steroid medication. We are now on the path of getting him to Minnesota to get him a bone marrow transplant. Thankfully, all medical costs while we are in Minnesota will be covered, but we do not have the funds to cover medical costs once discharged (which includes his transfusions over here) as well as travel and hotel costs while we are over there. Updates will be given once we have them.

Current update as of 12/29/25

Mason is being referred to seattle childrens so they can handle his transplant and hopefully get the process going faster. His case is still currently under review by their transfer team and we're hoping to have news soon. He also had a repeat mri done 3 months from his last to make sure their hasn't been any more changes. Thankfully everything came back the same and nothing has progressed any further!

As of 01/08/2026 we are currently looking into malpractice. Since October I have been attempting to figure out if masons swab kit was ever received to put him on the donor list and have found out that he was never sent the correct kit( even after confirming the one that was sent was his). For those that dont know once symptoms start showing they typically start getting worse very fast and their is no way to reverse any possible issues that may occur. And as we have already found out it is in fact cerebral X-ALD we absolutely cannot afford to wait for these symptoms to start. I have 3 months worth of me calling and emailing and never getting a direct answer until yesterday. 3 months that he could've been on the registry and possibly found a donor. To say im upset is a complete understatement because I just want to blow up at this point.