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A place for those of us stricken with the disease Systemic Lupus. An autoimmune disorder, Lupus is the immune system attacking it's own host. This group is also for friends, family and caregivers of Lupus patients. Fibromyalgia patients welcome too!
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Blog: Live for the day and moment..MAKE IT COUNT!  


The title to this billboard are words that I have come to live by.  A little over 2 years ago my son Justin was diagnosed with a rare disease known as Wegeners Granulomatosis.  It is an autoimmune and vascular disease.  If caught in the early stages 80% of the people go into remission, but there is no cure..  Without medication, Wegeners is fatal.  With medication its treatable... Every case of Wegeners is different. 

Justin fell into the 20% of the people who didnt go into remission.  We know that he was in the last stages of the disease due to the fact  the disease had caused ulce in his lungs(which were almost holes)  and his kidneys were shutting down when we found out about the disease.  He was put on dialysis immediately and on multiple medications that have serious side effects... That was a hard day when we had to make a decision on whether to start the meds... Because one thing Justin would lose if he started the meds was the  chance of having children of his own.. But if he didnt take all the medication he would lose his own life.  So, we chose life...

Little did I know how this disease would change our lives forever.. Justin was on dialysis for a year and was able to get off of them for a year... That was until  a couple of weeks ago.. We were told Justins health was getting worse, I already knew that.. You can look at your children and know they arent well.. But he would tell you he felt fine.. Well, he goes this week to have an av fistula placed in his arm where he will do his dialysis in that fistula for the rest of his life or until he can get a kidney.. Tough part of that is.. Thats if his immune system will stop attacking his organs to make that possible.

Justin is in Pre Stage 5 Chronic Renal Failure-also known as "End Stage Renal Failure".  Its a scarry place to be... The renal failure alone could take my sons life, but then you have the Wegeners as well... Its like being put between a rock and a hard place... Because at this point, with those two medical conditions; there is no way of knwing how long he will remain here with us... That is so hard to swallow as a parent...  Its tough to watch your son slowly demise... Its hard to know the pain he feels inside and the anger he feels is off the charts.. But who can blame him?  What hurts me is that he throws all of the anger on me... I guess when your a single parent thats to be expected.  I lost a part of my son to this disease and I will never get that part back...

Justin is a young man you always seen smiling and cheerful... That is past tense... What eats at me is the fact that looking back on his life, he doesnt have to many good memories that he will take with him when he goes... That tares me up... My kids went without the lil "extras" in life that most kids have.. I was only able to provide shelter,food and clothing... The  basics..  We have never been on a family vaccation, he has never been to a concert or sports event(like a basketball or football game).  It was more than that, he was robbed his childhood by the man who helped create him.... So, those are the memories he will take with him and leave here with us..

I came to this site in hopes of reaching out for help...  I hope someone out there will help me make some memories happen and bring some cheer to his life... Lord knows he needs it.. Anything anyone can do to help will be greatly appreciated... Even if its to lead me in the direction I need to go to get a wish or two granted on his behalf... 

Thank you for taking the time to read our life story...  And I hope everyones wishes come true.... As a parent, I just want to say to everyone who has kids or family.... Live for the day and the moment...Make it count, becasue that day and moment may be all you have left with the one you love so dearly....

  Posted: Sep 7, 2008 3:08pm | comment (0) | discuss (0) | permalink | edit | delete Visibility: Everyone
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Tags: childrensonhealthwishlovedeathterminally   illspiritgivinggiftfamily  

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