Get Levi To Boston

Levi will turn four years old on December 29, 2022. He was born with a rare genetic mutation of the ACTA2 gene that was not diagnosed until he was two years old. This mutation causes a disease known as Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS). There are only 50 people in the world that have this mutation.

This disease is rough and causes problems in different ways for different patients. It affects all the smooth muscles in your body; those are all the muscles we do not control. It caused him to retain a large Patent Ductus Arteriosus in his heart that we have yet to figure out if or when a heart surgeon can close it.

The MSMDS caused Levi to develop multiple systemic health issues. Levi has a large bladder that has led to urinary tract issues. Levi manages Gastro Intestinal tract issues with his esophagus and periodic vomiting. Doctors say Levi has already suffered small strokes and is at severe risk for strokes in the future, especially when under anesthesia.

Another major concern is his extreme pulmonary hypertension. Pulmonary hypertension is a chronic lung disease that made him oxygen dependent at age 2. While we play Oxygen Cord Olympics now, you can imagine the massive change our family experienced putting an oxygen cord on a two-year-old.

Levi has frequent appointments 90 minutes away from home in Minneapolis to see his six specialists for his many medical diagnoses.

Since learning about Levi's diagnosis, we have searched for other families dealing with MSMDS and doctors specializing in its treatment. We discovered a new Facebook group for MSMDS patients and family members a few weeks ago.

We reached out to the person who started the ACTA2 Alliance and who is in contact with doctors spearheading research into the condition and possible treatment. These doctors are based in Boston, and in May they will help host a MSMDS conference that will benefit our family. While there, we hope to have the doctors leading the most up-to-date research evaluate Levi in person.

For two days at the conference, he would get to play and interact with kids who are just like him (or mostly like him), and his sisters could meet other siblings who know what it's like to have a sibling with a rare chronic illness. We will learn about the latest research and new ways that we can help Levi while interacting and learning from other parents who know what it is like to have a kid with the same obstacles as Levi.

We are asking for donations to help cover the cost of travel for this upcoming conference. Any donations would help fund airline expenses because driving 19 hours with Levi would be extremely hard on him and his sisters. Donations would also cover hotel expenses, food while we are there and a rental car. They would also help cover expenses for oxygen or medicine while there.

We also have not yet figured out if these doctors will take our insurance or if it will be something our insurance will cover for the doctors to see him. This amount we have put as our goal estimates what we think will cover our travel and miscellaneous travel-related expenses.

We put this Go Fund Me campaign together because people have been asking how to help Levi and this is currently the best way. Any donations that are given are greatly appreciated.

Thank you all in advance for whatever you can help with!