Hi Everyone

Jan 13th, 2026, I probably got the worst news of my life…

For months, we’ve been dealing with uncontrollable seizures with my 4-year-old, Azylah.

The doctor decided to do genetic testing & it came back “potentially positive” for a gene mutation of CLN6 (Batten Disease). From her neurologist, due to her brain MRI & symptoms she has, she most likely has it…

Jan 27th We Unfortunately Got Confirmation Of It…

Batten Disease is a neurodegenerative disease that causes people to lose their vision, lose their ability to walk & talk, and eventually lose all their functions until they pass away. Life expectancy is only 8-12 years old.

There is NO cure, but there is a medicine that can potentially slow down the progression. In the USA, it costs $9,000 to $26,000, or if you go to a different country, it can cost $2,000+ a month…

This Past Month has been the hardest days of my life. This is the most gut-wrenching thing you could imagine… I have no words for anyone. I’m crying while typing this & can’t imagine life not like it is now.

We have requested the medication through insurance and they denied it and we appealed and they have still denied it. Every moment is crucial. Im requesting assistance to help cover the cost of the medication until we can possibly get insurance to cover it but every moment is crucial.

If you cant donate. Just Sharing Will Mean So Much… Thank you so much