Sage's Friends

On Friday January 28th, days before Sage’s second birthday (2/1), Sage was diagnosed with an ultra rare rapid, progressive neurodegenerative disorder called Infantile Neuroaxonal Dystrophy (INAD). There are only 150 cases in the entire world currently. It is a combination of Alzheimer’s disease and ALS in a child.

 

There is no treatment or cure. She will become paralyzed, possibly blind and/or deaf, and unable to interact with her surroundings. Eventually the combination of the diseased brain and physical weakness becomes too great to sustain life and they will lose Sage between 5 and 10 years old.

 

Our entire family is devastated, but we can’t begin to imagine how Loreen and Steve feel. We have started this GoFundMe to try to lighten the load. Sage currently requires 24/7 care, and due to her severe weakness, medications, and tube feeds she cannot attend daycare anymore with her brother-- they are paying for a nanny just for Sage to be able to make all of her appointments and get proper medical care. Their insurance does not cover some of the expensive medical equipment Sage needs, including a standing frame. Loreen is away from work at the moment given the awful news. They are trying to plan family vacations now so that Sage can enjoy life to the maximum while she can still move and interact (and you have to be 2.5 to qualify for MakeAWish). We hope that this account can provide some support for them while they navigate their grief, this new life, and trying to give Sage the best life possible.

****There is a possible gene therapy trial least 18 months  and a lot of  funding away. In honor of Sage you can donate here: https://inadcure.org/mission/superstars/sage-p