· Although Shawn has a good job, he has not been able to work for quite a while. He has been on half pay for a long time (so he doesn’t lose his job), which has been made possible by amazing people who have donated sick time to him.
· We have two children ages 10 and 4.
Shawn was diagnosed with Ulcerative Colitis in 2014 at the age of 23. Doctors originally tried two medications to control it. One involved giving himself a shot in the stomach every couple of weeks, which stopped working after about 11 months. The other medication required him to have a portacath surgically implanted so he could get medication through an infusion every few weeks. This didn’t last long, as the medication wasn’t controlling his disease. He had constant inflammation and loss of blood daily.
Since 2015, Shawn has been admitted to the hospital numerous times, sometimes for a month at a time. During this time, he has had 12 surgeries, including 3 temporary ileostomy bags, complete removal of his large intestine, a hernia repair, and many others. He has also had numerous blood transfusions, scopes, CT scans and MRIs. He has spent more time in the hospital than he has at home in the past two years. The hospital is 40 minutes from home, and I was by his side every day that he was in the hospital. I work all day while at the hospital, and then I make sure to be home for the kids after school to run them to sports/dance events or whatever it is they have going on. We’ve tried to keep our family life as routine and normal as possible.
Most recently, Shawn was admitted to the hospital in Albany for a week (3 hours from home). He had many tests done there, and they found that he is going to need corrective surgery. The surgeons in Albany recommended three hospitals in the U.S. that specialize in this type of corrective surgery. Their final recommendation is in Cleveland, Ohio, so we will be traveling about 8 hours from home for him to have this surgery done. They have estimated that we will be there for about a week, but they cannot be sure how long we will be there until the surgery is over.