The story of Aaron
During the summer of 2021, Aaron started to complain about his hearing and unable to see. This led us down a rabbit hole of doctors who could not identify any wrong with Aaron. As school started in August, Aaron started having difficulties with his schoolwork, unable to complete simple task and continue to complain about his vision and hearing. We consulted with various specialist, and they could not identify the issue. In December, his pediatrician ordered an MRI, and later that day was told that they found abnormalities in his brain. That afternoon, my husband started his research the results from the Radiologist to better understand this disease. This research, lead us to ALD Connect and then to Dr. Lund. Dr. Lund walked us through the expectations for the appointment with our local Neurologist. His staff help us navigated our insurance and 2 weeks later we were in Minnesota. Aaron was given further test where it was determined that Aaron was diagnosed with Advance cerebral Adrenoleukodystrophy and was given 6 months to live. We were devastated as a family. Dr. Lund was very honest and supportive. Seven months later, Aaron has had 3 seizures and the last one in June was major, with each seizure Aaron loses a function. This has advanced his symptoms and he is currently blind, hard of hearing, nonverbal, unable to walk and has difficulty in eating. We are working with Dr. Lund to find alternative, experimental treatments (there is not treatment for advance ALD) to stop the deterioration of his brain. The doctors think that Aaron may not make it to the end of the year, but God is our main physician, and he is in charge. Aaron has lived to see his 10th birthday and continues to fight this battle. Aaron is currently immobile, is on a feeding tube, he experiences spasms daily and struggles to maintain his breathing rhythm. Together, we tried to take in one day and moment at a time.
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