Brycens Facebook Page
Hello, my name is Alyssa, I am Brycens aunt. This is setup for any expense needed for Brycen while being away. Any funds not used will be donated to Gene Therapy Center. Thank you for being here, if you cannot donate that is okay. The power of prayer works too.
*20,000 is not the goal amount, we just weren’t sure where to put a cap due to not knowing how long this process will be*
Here is Brycens Story
When Brycen was a couple months old, he was diagnosed with Adrenoleukodystrophy (ALD). In short, the definition for ALD is, “A rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When VLCFAs accumulate, they destroy the protective myelin sheath around nerve cells, responsible for brain function.”
We’ve done countless MRI’s since Brycen was a couple months old with no signs of the disease. On a very dreadful day in the summer of 2020, we learned from an MRI that he showed a small spot on the brain they thought may have been linked to this disease.
In October of 2020, we had a repeat MRI done and the small spot they had seen before started to progress and it was confirmed as a lesion due to ALD. ALD can only be treated with a bone marrow transplant or gene therapy.
In Brycens case, we feel gene therapy is the best option, therefore, we are actively trying to pursue gene therapy in Minnesota. We also believe in the power of prayer and believe that everything is in God’s plan.
- Melissa Allen
- Robin Vorous
- Skylar Glascock
Organizer and beneficiary
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