Support Bhodi’s Fight Against Spinal Muscular Atrophy

This fund raiser is for our 2.5 month old son Bhodi who will have some medical procedures done that have a potential price tag of $1.3 million before insurance. We are from Karlstad, MN which is in the far NW part of the state. Bhodi has Spinal Muscular Atrophy-a genetic disorder from birth. He is missing a protein called SMN 1 (Survival motor neuron). This is a lifelong disorder under the umbrella of Muscular Dystrophy. He needs gene therapy-which is a 6 hour IV infusion that will essentially replace that SMN 1 that he’s missing in his muscles. Without treatment, the disease is fatal. With the treatment, he will live a mostly normal life but will likely be behind in the major muscle milestones like sitting, crawling, walking, etc. He will need routine physical therapy check ups, swallow study monitoring, as well as cardiology check ups-all down at the U of M children’s hospital in the cities. On September 17th we will go to the cities for the gene therapy. We will have to stay until the 25th for close monitoring after the infusion.

Any amount you are willing to donate will help and strictly be used to cover costs for medical bills and travel costs.