About Mason
Mason was a fun, loving, unique 13 year old boy. He had a thirst for knowledge and was full of random facts. He loved life and was always happy. He enjoyed being with friends, playing basketball, watching TV, researching on the Internet and many other things.
It was summer of 2013. His older brother, Austin(then 16) got very ill and was diagnosed with hemophagocytic lymphohistiocytosis (HLH). HLH is a rare life threatening disorder of the immune system. Following this, it was discovered Austin had X-linked lymphoproliferative disease from XIAP gene mutation, known as XLP2. Due to this, Mason had genetic testing done, and in September 2013 was told he also had XLP2. He was advised this would in turn cause him to get HLH in the future, as it did his brother that year, and also a list of other possible complications.
To cure him of all XLP2 complications and prevent HLH from occurring, Mason had a bone marrow transplant in May 2014 at Cincinnati Childrens Hospital Medical Center (CCHMC). His sister, Raegan, was the donor. Austin had previously had his transplant, also at CCHMC, in January 2014 and was doing as expected.
In July 2014, the tests showed Mason’s transplant was failing. So Raegan came to Cincinnati and gave blood which they separated out just the t-cells. They then gave Mason these t-cells which is known as a donor lymphocyte infusion(DLI). Unfortunately on August 1, 2014, Mason began severe signs of graft versus host disease(GVHD) as a result of the DLI. He had both skin and gut GVHD. It was said to be stage 4 of 4.
Mason battled through this trying every medicine CCHMC could provide him along with photopheresis. He had many complications along the way, including kidney damage which caused him to begin dialysis.
Mason maintained a positive attitude throughout and he did everything the doctors, nurses and therapists asked of him. Unfortunately his body gave out. He had kidney failure, damaged GI tract, damaged liver, an infection on his tricuspid valve, brain slowing and respiratory failure.
Mason passed away on August 27, 2015 surrounded by his immediate family.
To read his, and Austin’s, entire story with blog updates go to the Posts page on this website or Hopeforspencerboys on Facebook.
In honor of Mason and to raise awareness for both XLP2 and HLH, the fund Mason Spencer Lives On has been created under the Illinois Prairie Community Foundation. It has been created to provide miscellaneous scholarships in Tri-Valley school district (Downs, Illinois) for the passions Mason had while he attended there, to provide college scholarships for those who have had HLH (or a BMT to prevent HLH) and to provide funds to non-profit organizations for HLH, bone marrow transplants, immune disorders and blood diseases. We also hope to raise awareness for HLH while doing this.
