CURE FOR KAIDEN - start the trial now and give my son the gene therapy he needs.
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Kaiden Sturgeon-Harper is an innocent little boy who was diagnosed with a horrible, deadly, genetic disease known as Sandhoff disease. It progessively destroys nerve cells in the brain and spinal cord. This disease isn't known to many because it's so rare. 1 in ever 500,000 are at stake. His life started out normally, but only for a short couple months. Symptoms are, loss of muscle, not being able to sit up, hold things, no crawling, blind, deaf, paralysis, tube feeding, seizures, breathing difficulties. Death by age 2-4, if not sooner. This disease is torure to witness everyday. Ever since I got the devastating news I've practically put my whole life aside to live Kaiden's life for him and fight the fight he isn't able to do himself. Fight for his own life. As his mother, I am his voice and power and I will not stop until he is free of sandhoff.
August 2nd 2016, my night was instantly made as soon as I read an article saying 'researchers finally broke the blood brain barrier' which means they can finally inject the enzyme Kaiden is lacking(hex b chromosome). Kaiden's very own doctor, Dr. Jagdeep Walia is the one who founded this cure!!! I thanked God, and jumped for joy. Next day, little did I realize my hopes were all crushed again when I found out from New Hope Research that it could take up to 2 years before they do human gene therapy and costs 1 million dollars for the drug used. Well we don't have that kind of time or money!!
Always feel like it's one step forward and 2 steps back. I am so torn up about this. That is a whole century to these babies :( every day is a battle just to keep them calm so they don't seizure, percussing and vest therapies to help them breathe properly and so pneumonia doesn't strike. Special equipment and baggage dragged around everywhere you go, awake all hour of the night, nurses, doctors, Dietician's; feels like they moved on in. Well I can assure you, it's definitely not how I thought my life would play out. It's been one hell of a tough couple years and I can't wait for the day it gets easier....
So this is where we need YOUR HELP!!!! This is why I am starting this petition. I am trying to persuade the minister Ginetter Pepitas Taylor into pushing he trial forward. These poor, innocent children DO NOT HAVE TIME TO WAIT! You know what really gets me.. how today in most states(even in our home town) one is able to end their own life as they wish. Well shouldn't one be able to HAVE A CHANCE AT LIFE if there's anything at all available that could potentially save them. Well that is where we stand, we have absolutely nothing to lose right now, and everything to gain, but we NEED THIS POTENTIAL CURE NOW as everyday without us is more of a risk and less promising. Please take a stand with us by signing this petition.
Etransfer money to firstname.lastname@example.org (Kaiden's savings account is linked up to mine as he's not 18.)
As most of you aware, we have a gofundme account being passed and shared around on Facebook where our family is taking in donations. Go fund me page link:
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Kristen Sturgeon needs your help with “Minister of health Canada: CURE FOR KAIDEN - to start the trial now and give my son the gene therapy he needs.”. Join Kristen and 8,190 supporters today.