Titus was born a month early in Lexington, KY. After a nine-day NICU stay due to a left side enlarged heart, doctors told new parents Charlotte and Thomas that their son’s newborn screening came back positive for MPS1. They had never heard of this rare disease and were heartbroken to learn that the prognosis was not good. The life expectancy for children with this diagnosis is around ten years.
Doctors referred this new family of three to the genetics team at UK hospital. After they ran more tests, the team explained that Titus needed expert care in Cincinnati.
Charlotte, Thomas and baby Titus traveled four hours away from their home in Burkesville, KY and arrived in Cincinnati in April of 2019. After they met with genetics and the bone marrow transplant team, doctors confirmed that Titus did have MPS 1. His body is lacking the necessary enzyme to break down sugars produced by cells. They make an artificial version of this enzyme now, but currently, it can only do so much and there is not a lot of information on the success rate since it just came out in 2005.
There is no cure and the only treatment is a bone marrow transplant and that’s just to help those diagnosed with MPS1 live the most productive and normal life as possible.
After starting with the enzyme replacement therapy, Charlotte and Thomas decided to move forward with the bone marrow transplant for Titus. On June 28th, after eight days of chemotherapy, Titus received his transplant. He was just three months old. His transplant did not go smoothly and he experienced complication after complication, landing him in the intensive care unit. Septic and on a ventilator for two weeks, Titus was struggling for his life. With his mom and dad by his side, he kept fighting. Every day, he managed to smile for them.
Charlotte and Thomas were going back and forth from the hospital to a hotel for weeks until they received a call on the 4th of July that a room was available for them at Cincinnati’s Ronald McDonald House. “I remember watching fireworks on our way to move into the House from the hospital while Titus was in the ICU.”
Titus had multiple stomach issues that were resolving so he got discharged 47 days after transplant. For that time, he joined his mom and dad in their room in our House just steps away from the hospital. However, he was readmitted six days later and stayed for a few weeks. After he was discharged again, he only remained out of the hospital for two days before fevers put him right back in the hospital. It was mid-September before he got discharged and stayed that way. The back and forth and the bumpy road were tough for this new family of three. However, having a room in our House helped make this difficult time more manageable. While they waited for Titus to get his weight up so they can go home, they stayed in our House and went back and forth to his appointments. Great news came in October when they could finally take him HOME.
Through tears, Charlotte explains:
“He is the strongest little one I know. Every day that he hasn’t been sedated, he has smiled. No matter what he was going through, as long as I could get one smile out of him it gave me the strength to get through the day. We didn’t really know what all was involved with RMH. But it’s now our home away from home. We are very thankful for it. Four hours is so far. My mom was diagnosed with brain cancer during all of this, so I drive home on weekends when I can to be with her. We are very thankful to be here because it makes things so much easier. Usually, I would stay up with him all day and Thomas all night. We would switch on and off with who was with him and who was at the House. We were so glad to get in here because our van was crammed to the max. We needed a place to stay.
I know there are a lot of charities, but it is obvious here where the money goes. I’ve met families here from overseas and they have nowhere to go. You guys treat it like home, they try to make it home for us. Even though Titus is very small, giving us a quilt and a toy was a big deal to us because I know we will remember where that came from. There are two meals a day, there is always food in the pantry, always snacks, it is home here. Being right across the street is so helpful. It’s huge to donate to this House.”
Your gift will help kids like Titus have the support they need every step of the way.