Mason's Medical Journey
Mason Tilley is one of the happiest, smartest littles boys I know despite all he has been through in his three and a half years of life. He is the first born to my son Robert and his wife Kari. Mason adores his little sister Karsen.
Diagnosed after birth with Heterotaxy with complex congenital heart defects, polysplenia, malrotation, and a few other things in between; He has undergone 2 abdominal surgeries, 3 heart catherizations, 4 open chest heart surgeries, a diaphragm plication, a pacemaker implantation, and many more noninvasive procedures like echocardiograms, electrocardiograms, x-rays, etc. Mason has had to participate in therapies such as speech, physical, feeding, and occupational to get him caught up with age appropriate activities. Mason started off receiving care at one of our local children’s hospitals here in NC. They provided him with amazing care but they just were not as experienced with kids with heterotaxy. Robert and Kari researched with the help of Mason’s local cardiologist looking for other hospitals that were more experienced with Mason’s conditions. Children’s Hospital of Philadelphia (CHOP) joined Mason’s medical team. The family traveled there for testing in May of 2013 and back again in July of 2013 for Mason’s third open chest heart surgery. Mason did not take well to his third heart surgery. It was considered to be a failed surgery and he immediately underwent his fourth open chest heart surgery to reverse what had been done during the third. CHOP’s surgeon and doctors did not have any explanation as to why this surgery failed. It was expected to be a walk in the park for Mason. Luckily, Mason recovered from such trauma and immediately became the boy we knew him to be before this failed surgery. In May of 2014, Robert, Kari, and Mason returned to CHOP to discuss what the next steps were in his medical care. They were given one option, to retry the surgery that failed. If it failed again, heart transplant was next on this list. They also met with the heart transplant team to learn a lot more about the process. They returned home and continued life as normal as they could while staying true to their top two priorities. Giving their kids the best, happiest life ever and getting the best medical care for Mason.
Over the summer of 2014, Robert and Kari reached out to Boston Children’s Hospital (BCH) for a second opinion; another top hospital that has experience with heterotaxy. BCH offered another option that Mason had never been given before. After long discussions with Mason’s care team, Robert and Kari have decided to explore this new possibility.
Robert, Kari, Mason, and Karsen will be making the first of many trips to Boston at the beginning of April. This trip comes with routine clinical testing, a heart catherization, and possibly an open chest heart surgery.
Having a child with medical needs can really drain finances. Traveling for medical care can really get expensive. Especially since you are paying to travel, paying for meals all while still having to pay the bills back at home. No matter the financial situation Robert and Kari are in, they are determined to find Mason the best care available to him and to exhaust all options before getting to the last option on the list, a heart transplant.
Here is where all of you can help. I have set up this account to help with medical expenses, medical travel, and bills. Any donation will be very much appreciated. Every little bit can help these amazing parents get the best care possible for Mason.
