A birthday celebration took place over the weekend for a 1-year-old who may not make it until the age of two, due to a rare disease.
At 2 p.m. on Sunday afternoon, Aubrey Rose was joined by members of the public as they did a drive-by birthday for the extremely ill child.
Aubrey suffers from Alexanders Disease, a rare neurological disease which has been diagnosed less than 500 times since 1940.
According to Hunter’s Hope, a foundation dedicated to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies, Alexanders Disease is fatal.
“Alexander Disease is a form of Leukodystrophy that is a fatal, neurodegenerative disease. This means that the neurons in the brain continually lose structure and functionality over time,’ states the foundation on their website. “Typically, those affected by this disorder appear healthy until the onset of symptoms. Onset of the disease is due to the destruction of myelin in the brain caused by mutations in the GFAP (Glial Fibrillary Acidic Protein) gene.”
Aubrey was a happy and healthy baby girl for the first couple of months of life. In January she suffered a seizure and life has never been the same.
The following is taken from a post made on the Aubree’s Army Facebook page by her Aunt.
“This past January, she was taken to the hospital after experiencing a seizure. Doctors told Alysha and Jake that she would be admitted for tests and likely stay for @3 days. Everything went well. Doctors were wonderful and continually consulting with doctors from Toronto. Optimistic on both ends the family was told that what she had was not life threatening. A few more tests and they would be on their way. Then the moment happened that no parent wants to experience. They recieved a diagnosis… Alexander Disease.”
In the latest update on the page, Aubree hasn’t been doing well, with frequent seizures and significant deterioration in her condition. Doctors from Sick Kids Hospital, who have been amazing, are working with her parents to continue to treat the disease.
Shirts and masks to help raise money for the family are available here.
The drive-by had a great turnout and the family was extremely excited to see the support for their little girl.
Stay with SaultOnline/ONNtv as we continue to share updates on Aubree as they become available.