My husband Justin was born with Marfan Syndrome, a connective tissue disorder. The aorta is one of the many things affected by Marfan's. Many of you know Justin wears eyeglasses; this is because he had his lenses removed as a child. As he grew into adulthood, his aorta became enlarged and has been monitored for years now. Even with constant monitoring, his aorta dissected in 2017. Thankfully, they were able to control it until now. He now needs surgery on both his upper and lower aorta to prevent the type B dissection from growing larger. His surgery is scheduled for April 11th at Brigham and Women’s Hospital in Boston.

The surgery can range anywhere from 12-20 hours, and using the surgeon’s words, it’s a morbidly grotesque surgery. Because of Marfan Syndrome, they are not able to use some of the newer techniques; his body is just not structured for them. This means that he will require several weeks in the hospital and rehab before he can come home, and after he is home, it will be several months before he can work again. He is not the first member of the family to undergo this surgery. We have seen many different outcomes and pray that Justin’s outcome will be one of the better ones.

Justin has been out of work since November. I work full-time, so we do have health insurance to cover the surgery, but I could use some help with some of the added expenses that will be incurred at a time like this: travel, parking, and copays, just to name a few. I would like to stay close to the hospital while he is there and am looking into the many available options. This will allow me to work remotely while still being available at a moment’s notice. We are remaining optimistic that he will be able to rehab close to Grafton, but it is possible he will need to go to Spaulding in Boston.

Now that you know our circumstances and the long road we will be traveling, let me introduce you to the man affected by this insidious disease. Justin is my husband of 30 years (this coming September ❤️). Besides being a husband, he is also a father, a partner, a brother, an uncle, and a friend. We have raised three sons: Greg, Doug, and Jeff. In 2022, we lost our son Doug to an aortic aneurysm; he was just weeks away from surgery, but you can’t tell an aneurysm to wait.

The boys always called Justin the “good one” because he always found a way to pull off whatever they asked him for. He is also the younger brother to eight siblings; they helped raise him alongside his nieces and nephews. He is the uncle that taught, or at least tried to teach, them all to do back dives and backflips. And I won’t even get into his love of making tie-dyes, hairbands, and fireworks.