Support for Michael Fernando #MichaelStrong

Greetings Everyone!

We are reaching out to anyone that is willing to help raise money for our sweet nephew, Michael, and his family. Michael is the son of Monica and Stephen Fernando.

Michael is a 9 year old boy that was diagnosed with X-Linked Adrenoleukodystrophy (ALD) in late July of 2020. Michael was rushed to the children’s hospital after experiencing a seizure. His MRI was abnormal and showed demyelination (damage to the protective coating of the nerves in the brain.) Genetic testing ensued, which took an excruciating two weeks. Their worst nightmare was then confirmed. Not only did Michael have Adrenoleukodystrophy, but a rare form that affected the frontal lobe of his brain. The family then journeyed to Minnesota, in hopes that Michael was a candidate for a clinical trial. Unfortunately, his disease was too far advanced. The Minnesota doctors offered a palliative treatment plan in which Michael would take daily oral cancer medications and receive biweekly chemotherapy infusions in hopes that the progression could be slowed. Although treatment has helped slow the progression, he continues to decline swiftly. Michael has lost the ability to speak, walk, independently use the restroom and is beginning to show difficulty chewing food. Life expectancy for him is less than a year. ALD is a progressive and degenerative disease that silently ravages the brain initially causing regression. Symptoms grow worse, including blindness, deafness, seizures, loss of muscle control and progressive dementia. This downward spiral eventually leads to death.

Michael is a silly, sweet and curious boy who’s quality of life diminishes daily. He will not grow up to be a teenager, go to college, get married, or have children. We are soaking up the time we have left with him and will continue to enjoy the things he loves to do which will include many Disney trips, watching dinosaur movies and eating a whole lot of candy!

This has been an emotional roller coaster for his parents, his sister Annabelle and entire family. This battle will affect our family and friends on so many levels. Please help and join us in raising money for this unexpected journey forced upon them. This will aid in medical expenses not covered by insurance and when Michael’s battle is lost. Let’s help remove some of the financial burden from their shoulders so they can focus on the remaining time they have with their son Michael.

Anything you are able to contribute will be immensely appreciated. If unable to make a donation, you can still make a difference by sharing this post, spreading the word and signing the petition to get ALD added to Newborn Screening in all 50 states!

http://chng.it/zPSDqG2Z4J

 

#MichaelStrong

 

Thank-you from the bottom of our hearts

Jacqueline and Ashley