Helping baby Zion…

It was just a week ago that my niece Kristina braved the Minnesota winter storm to get to the hospital to have her baby boy, Zion. After hours of labor, Zion was finally born caesarean and met his mommy face to face! ❤️ Soon the whole family would get to meet Zion and admire his giant fat cheeks!

In a sudden turn from a joyful Easter weekend, my niece and Zion’s daddy, Josiah, made their way to the University of Minnesota hospital, after finding out baby Zion was the first newborn in Minnesota to be diagnosed with Krabbe disease.

Untreated Krabbe disease has a very poor quality of life. Seizures, blindness, deafness, very short life span. 2-4 years

Treatment improves quality of life, but is not a cure. He will be significantly disabled. The treatment is new enough that no one knows whether it will extend life.

Kristina & family are shocked, dismayed, grieving.

Treatment, a bone marrow transplant, must be done within 30 days of life to be of any use, similar to cancer treatments.

With an Easter evening check in to the hospital, Kristina and baby Zion’s will stay for 6 weeks to 2 months.

Krebbes is a rare genetic mutation where 1:100,000 people are “carriers” and then of those 2:200,000 decide to have children, then there is a 1:4 chance of this disease being the result.

Minnesota just added Krabbe disease testing to the newborn screening February 26, 2024 along with a half dozen states in the US. They have learned over the last 10 years that after 30 days of life, the treatment isn't effective at all. Zion is the first newborn in MN to test positive. There are a small number of other patients across the nation who have had the treatment and feel that it is beneficial to quality of life and hope for longevity.

Please consider helping support baby Zion’s care. Thank you.