Our 23-month-old son, Odin, has battled medical mountains since birth. Odin was born at 32+4 weeks gestation and spent 73 days in the NICU. Fast forward nearly two years dealing with many tremendous medical complexities, Odin was diagnosed with Pierpont Syndrome and a congenital nephrotic syndrome. We learned his genetic conditions are causing many of his current struggles.

Last month, Odin had a g-tube surgery to give him a chance to catch up in growth as he can't eat more than purees orally. During that hospital stay, he had an MRI for possible absence seizures that gave devastating results. Odin has a Complex Chiari 1.5 Malformation resulting in Obstructive Hydrocephalus and a tethered spinal cord. We learned Odin needed urgent surgery to release the pressure and correct his Chiari.

Odin is scheduled for four brain surgeries in one go next week. We are asking for donations to help us cover the gap in bills from us needing to take time off to help him through surgery and recovery, help with meal costs “living” in a hospital, and help with other medical costs Odin has.

Odin will need several days in the hospital and a period of 4-6 weeks before he can return to light activities such as walking. It may take several months to a year for symptoms to fully resolve and for him to return to his previous level of functioning.

Thank you all so much for your support!