Hi, our sweet boy Grayson was born with a rare genetic disease called Adrenoleukodystrophy. This disease affects roughly 1 in 17,000 people, and only 4% of them are known to be de novos. Grayson is a de novo baby, as he is the first in our family to have X-ALD. Due to this disease being rare and having no predictability with symptom development, he has to be closely monitored for symptoms, including lab work every 3 months and MRIs every 6 months.

We have struggled to get an MRI scheduled after his November one was pushed back due to him being congested. But we were finally able to get one scheduled for April 21st - just before his 2nd birthday.

This is unfortunately a very pricey test even with insurance, and we are asking for some help to afford getting him his MRI.

Anything contributed to help afford it is very much appreciated!

Thank you in advance for your help in getting this test done for our sweet boy Grayson. ❤️

If you'd like to help contribute but don't want to use this platform, please reach out to me. Thank you again!

Here's an update on his 4/21 MRI.

He did great throughout the Anesthesia and MRI recovery. We were so grateful to be able to see his Neurologist shortly after and review results. The MRI looked normal for his age. However, they saw a spot in his brain - which did not light up with contrast thankfully - but because they found a spot they want Grayson to return in 4 months (instead of 6 months) to monitor the spot. The uncertainty is not easy however we know what a strong boy Grayson is and his doctor reassured us that it is likely not something to worry about right now.

Thank you again for your support.