Daniel’s Fight is driven to raise awareness and educate the public about Alexander Disease, all while raising funds for research to one day end this nasty disease. ALL PROCEEDS go directly to the Waisman Center at the University of Wisconsin where the experts are researching a possible treatment.
When Daniel was born, he was considered underweight and was enrolled in the Babies First Program to follow his progress. Every month, he would miss a milestone here and there, but I didn't think much of it. At about 6 months, he was referred to “Babies Can't Wait” because he was missing too many milestones. After further evaluation, he was diagnosed with "Sensory Processing Disorder" and was assigned an OT 2x/week. Daniel still wasn't progressing on time and was demonstrating developmental delays, so we went for further evaluations at the Marcus Center. Daniel didn't have Autism, but the consensus was a "neurological" issue. The neurologist wasn't getting anywhere with all the blood tests, so an MRI was the next step. March 2012 Daniel was diagnosed with Possible 'mitochondrial disease'. He would be referred to Emory Genetics for testing, more blood work, and a follow up MRI in 6 months. Long story short, all the blood work came back without any definite answers (some levels high - most levels normal range). The news that was hardest to hear came Thursday, August 23rd, 2012. The follow up MRI results showed Daniel possibly had Alexanders Disease. So, yet again, we encountered another blood test and 'hurry up and wait' for 6 - 8 weeks again for the results.
This is where Daniel's story begins...