I'm writing this because my Son has been affected by Autoimmune Disease which has caused him to have Autoimmune Hepatitis. He just turned 17 yrs old and was always in good health apart from his Scoliosis.
This may be long but I want to be sure everyone understands what happened and how it's affecting his life.
From the start : Starting last year during school/his work program he was always tired , would get pains in his stomach , vomating for no real apparent reason. The teachers would call me asking if he eats at home and if I needed help to buy food "Because he kept getting skinnier and skinnier. I said No , I have my grocery bills if you'd like proof , he's well fed and sleeps at good hrs etc..
Now we're into this year "2017" My Dad , his papa passed away in April , and shortly after that everything went down hill really fast for Kristian. He lost 20 lbs in a matter of 6 weeks "Which made him drop to 84 lbs at 5'11 "with major vomiting , pains , fever etc..
I rushed him to the local Hospital one night because he was in and out of conciousness. They did tests but weren't sure what was going on and prescribed an ant acid for his stomach and gave us a referal to see a specialist "Gastroenterologist" at St.Justine Hospital in Montreal Quebec. He took one look at the blood work and the color of his skin , which was yellowish and said we need to do some biopsies. He said they would start with the stomach and small intestine because Cancer runs through our family "with my Dad , Mom , Myself" etc..
While waiting for the appointment he had more indepth blood tests and the Dr called back and said his Liver enzymes are through the roof and we need to go in and see his liver within the next 5 days because he was going to into liver failure.
Completely in shock and having no idea what could be going on , we went and had the surgery done "Biopsies of his liver taken" They said they would have the results within 7 to 10 days.
That night they didn't want us being any further than a 10 min drive from the Hospital "But wouldn't keep him because they said his immune system is too compromised" We had no choice but to stay at a Hotel and after everything that day alone cost me 450$
Please keep in mind that I don't work and had 3 strokes last yr due to viral encepholitis and am now using a wheelchair , walker and cane. So funds are very low as is..
4 days later I had to rush him into St.Justine Hospital by ambulance because he had fever , was very yellow and was in extreme pain. I felt so useless not being able to do something for him other than what I did.
It took 2 hrs in rush hour traffic to get there. We saw 4 specialists that night , one being the specialist that is following him. He walked in and said as blunt as can be "I was going to call you today and tell you the results , but since you're here" He continued to explain very vaguely.
Your son has an Autoimmune Disorder which is when your immune system thinks your own body/organs are a virus or bacteria and attacks itself. It has attacked his Liver , Spleen and Pancreas. He went on to explain that he now has Autoimmune Hepatitis which you can not pass on and he did not catch like a traditional Hepatitis "Please feel free to google Autoimmune Hepatitis"
Our world literally went from being concerned and confused , to being completely turned upside down and in a way that I can't explain or even put into words.
He said there's been a lot of damage done to the Liver and he needed to stay at the hospital for a week while they tried the only "treatment , not sure" and crossed our fingers to see if his immune system would respond. It did , thankfully , However this is just a temporary fix if you will. He's taking 17 pills a day , one being Chemo and as of today he started losing his hair :( Honestly the least of the problems at the moment. There is no cure for Autoimmune Disease or Autoimmune Hepatitis. He will eventually need a Liver transplant and even then his system will attack the new one as well. They went onto saying he also has crohn's disease and fibromyalgia "apparently it goes hand in hand"
We went on to find out that most people with his condition at the stage it's at only have a life expectancy of 5 to 10 yrs and that's only if his system doesn't attack any other organs like his heart , lungs etc..
We're all devistated as I'm sure you understand or at least I hope I explained it well enough. Sorry for this being so long but I wanted to be sure that everything was explained and understood properly.
This gofundme was honestly the hardest thing for me to do and put together because I've always been someone who will do what I must to get by without asking for anything from anyone. Sadly , I'm not in a physical or financial position any longer to do so. My son needs blood tests every week , Dr's appointments all the way to downtown Montreal every 2-4 weeks and a special diet that is beyond expensive. The funds are needed all for Medical related reasons. Travel , lodging / food expenses for when I was with him at the Hospital for over a week and future stays which are guaranteed unfortunately :( Funds for his special diet , face masks "because he has no immune system and just a small cold can literally be life threatening"
At this point the thought of Christmas is not on our priority list and I want that to be clear. None of this will be spent on gifts. He understands that his life is more important than materialistic items.
From a Mom who is willing to do anything she can to make my sons life a bit easier , I ask , I implore that you open your hearts and help my Son get what he needs in order to enjoy what he has left of his very young life.
I do owe a lot of money at the moment for the day of his liver surgery and then the 9 days in the Hospital. That will be paid first and of course for his up coming appointment on the 13th of December and more MRI'S etc..
If you do not feel comfortable donating to my gofundme , then please donate to St.Justine Hospital for the gastroenterology/oncology department or Any Autoimmune Disease/Autoimmune Hepatitis charities/foundations.
PLEASE remember that sharing this link , his story is just as good as a donation if not better. Other's need to know about this rare disease and to bring awareness. To help with testing , new medications , treatments. Most importantly to help other parent's not have to go through what we're going through right now.
Thank you from the bottom of my heart and My Sons and Families.
Krisandra , Loving Mom to Kristian , a very strong young man who suffers daily with extreme pain xoxo
Please read the latest update(s) unfortunately it's not the news we wanted to hear :(
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