ODIN'S Journey with MPS1

Odin was born January 12th,2024 to Robert J Kujawa and Rebekah Zellers. He had 10 little fingers, 10 little toes, the cutest little lips and a head full of hair. He was/is absolutely perfect.

What no one knew was that inside his little body things were not so good.

Odin was diagnosed with severe Mucopolysaccharidosis (MPS1) or Hurler Syndrome. This is an incurable genetic disease. It causes an abnormal accumulation of complex sugars in their bodies. It can affect bones, organs, cognitive ability and more.

Odin started his weekly Enzyme replacement therapy at the University of Alabama in Birmingham today. There is going to be much travel involved for his care as they live in Florida. This will be an 8 hour round trip drive each week for his parents.

Odin will then start on a 9-day treatment of Chemo and Radiation to prepare his little body for a bone marrow transplant. If all goes well, his stay will only be 100 days in the hospital. His Mom & Dad will of course need to be with him, and this is a big expense.

This is just the beginning of the unknown of what to expect in the care of little Odin.

Please pray for Robert, Rebekah, Odin and the entire family.

If you can help support them financially to offset the travel costs, the lodging expenses, and time off work they would greatly appreciate it.

I wanted to reach out to those who have graciously donated to the family, they are deeply touched by your generosity.

I have talked with my family a bit more to get a better understanding. Odins care is going to be long and hard. Rebekah will be living weeks, if not months away from home and Robert will traveling to and from home each week to see his son. All the medical bills, food and gas is just so overwhelming. I hope this explains things a bit more.

This little boy needs your prayers.

This is a hard time for the entire family.

Thank you