Baby Luke's Battle with SCID

This is 1 year old Luke.  Four days after birth he was diagnosed with Severe Combined Immunodeficiency (SCID).  More commonly thought of as "The Boy in the Plastic Bubble Disease".  The rough estimate of children diagnosed with this each year is 3 world wide.  Humans have between 1,500-5,900 T-cells in their body, Luke was born with only 4 T-cells.  T-cells are what help the body know that it has an illness and alert the body to fight it off.  Without these, the body has no idea anything is wrong, so it will not fight anything off, thus the illness overpowers the body, resulting in death. 

Luke's newborn screening came back positive for SCID.  The doctors called us in for retesting, which was an all day event, to find out it was positive.  We spent the next 3 months worrying about anything that could hold a germ from someone who had been ill.  We lysol wiped all of the groceries that came in the house.  No visitors were allowed to come see the beautiful new addition to my family.  As a single mom, I could no longer work because Luke had to go to U of M childrens hospital twice a week for blood work and tests, which really puts a bind on any kind of financial stability.  Not to mention being his soul caregiver, I couldn't risk getting sick, and passing it on to him, because any illness would have been fatal. On April 9th, 2015, 3 months after diagnosis, and what seemed like an eternity of fear and worry, Luke got his Bone Marrow Transplant.  This left him, and I hospitalized for 30 days.  Which not only effected Luke and I, but his 3 year old brother, who has to spend Luke's admissions between his grandparents house and his Aunts house.  The Transplant set in motion a whole new set of fear and worry.  It started his bought with Graft Vs. Host Disease, which means the Bone Marrow is trying to take over his body.  This has caused a series of serious Chronic and Acute rashes, that have been not only itchy, but painful.  
     He has been hospitalized more times than I can count for everything that has transpired from the transplant, and things aren't over yet.  There will be more hospitalizations in the future.  During Thanksgiving he spent 5 out of 6 weeks admitted, then was readmitted right after Christmas.  He was able to go home for a little under two weeks, and is currently admitted again.  This has been the regiment of his life, constantly in and out of the hospital.  
     Due to this, I can't work.  Bills pile up.  Gas money to get him to and from clinic appointments gets stretched to its breaking point.