when he was sixteen he started to have severe headaches, the doctors all said it was from the multiple head injuries and that he would need to learn to deal with the pain. the pain was so bad he would be in bed for days on end, and soon it started to affect his eyes. but he fought through it, and got married and tried to start a family. His wife got pregnant and they had complications that led to a miscarriage. The blossoming relationship could not handle the stress and ended in divorce.
CJ's eyes and head pain became ever more present. Then at age twenty-four, he started to have knee pain. the doctors could not understand why, but his bone in his knee just dissolved. they had to use a donor bone to graph a new knee. Soon after the knee surgery, he went completely blind in his left eye, with no warning. Again the doctors did not know why this was happening.
Then in 2015 his hips joints simply died making it nearly impossible for him to walk normally. the doctors said that the blood supply to the hips just stopped flowing and that he would need two full hip replacements. so at age 28, he needs knee, hip, and eye replacements. But he never gives up, he never complains, he just goes from one hospital or doctor to the next doing what they say needs to be done.
He doesn't have the life of a young man. He lives in pain every day, blind, and can't get out and move. He has no social activities other than his online gaming. but he never boo hoos "why me" or blame game. he takes it all in stride. he looks forward to the future; talking about what it will be like to do fun things in ten or twenty years. It breaks my heart to wonder what that road may hold for him. I see other men his age happy with families and jobs, and he struggles just to stay alive. There is no pain for a mother like this one, it's been such a hard journey.
We discovered his bone marrow stopped working two years ago. The doctors all said it was Leukemia and started to prep him for Chemo, but the day it was to start, they ran in saying "stop! he doesn't have cancer". We all thought it was a miracle... he was cured, the numbers had jumped up all on their own. The docs couldn't explain it, and you don't question God, so we ran with it as a miracle. My husband had just died from colon cancer, and I needed a miracle!
But it was not a miracle, just false hope. His numbers went unchecked for 2 years, and then he bumped his hip and fractured it, and he went downhill slowly from there on. by the end of 2017, he had less than half of his bodies blood. it was just gone. The doctors were baffled, and he spent a week in the hospital having very painful testing, that revealed that he has a rare genetic defect, that could potentially affect several generations of our family. He has had to have 2 units of blood giving through transfusion every other week since. His body just will not create blood and destroys the blood he gets.
CJ has been diagnosed with Dyskeratosis Congitia, a very lethal condition. That will require him to have a bone marrow transplant to save his life. we must first get his body ready. He will undergo several dental procedures, chemotherapy, and another testing of his bone morrow through painful hip punctures. Then he will need to have a Donor (whom he has found and is a perfect match) give the stem cells. a procedure will then remove the stem cells from the Donor's blood and will be implanted into CJ. He will need to be in the hospital for six weeks.
Once he is released from the hospital he must remain within 30 min from OHSU (the hospital) they say that is including traffic issues. so they really want him to stay within blocks of the area. The cost of staying in downtown Portland is ridiculously high. The average apartment in the area will be about 2000 a month. they have told me I should be ready at a moments notice to rush him in. I am the sole provider of income for my family and have depleted my savings over the past couple of years taking him to appointments and hospital stays.
They will not do the procedure until we can prove we have the money and place for him to go after he is released. This is not a plea because I want a car, or a vacation, this is a plea to save my son's life.
I know everyone has issues and needs money. However, if everyone I know only gave 1 dollar it would add up! That is one less soda a day! Thank you in advance, and please if you are under age 45 see about getting on the Donor registry it can be a simple giving of blood for you, yet you could save a life, and change a family forever!
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