Cure for Kaiden
Donation protected
My name is Kristen Sturgeon and I’d like to thank you in advance for taking the time to read this letter about my heartbreaking struggle to save my son’s life.
Kaiden Sturgeon-Harper was born on May 26, 2015. He was a typical baby full of smiles, laughs and love. There were a few medical issues right from the beginning but I was completely unprepared when at four months of age, Kaiden was diagnosed with a rare genetic disorder called Sandhoff Disease.
Sandhoff Disease is a neurodegenerative condition that progressively destroys nerve cells in the brain and spinal cord. With Sandhoff, a deficiency of the enzyme beta-hexosaminidase results in fat deposits in the brain and other organs of the body. The end result is blindness, deafness, seizures, paralysis and eventually death. This disease affects 1 in 500,000 children and Kaiden is the only child in Ontario as far as I know. The average life expectancy of those afflicted with this horrific disease is 2-4 years.
In November 2016 we began a drug trial through the University of Minnesota of the drug Zaveska. It isn’t a cure but it’s shown to slow the progression of the disease. I believe it has been crucial to extending Kaiden’s life. We recently received notice that our insurance company will no longer cover the cost of this very expensive medication (approximately $10,000/month).
Dr Jagdeep Walia is a geneticist and he is also Kaiden’s doctor. He has found a potential cure for Sandhoff Disease. It is a virus that is injected one time only intravenously. It may also reverse some of the effects of the disease but that is still unknown as Kaiden will potentially be the first human trial. The problem is that this one time treatment comes at an approximate cost of ONE MILLION DOLLARS. We have had a little media coverage and have been working nonstop to raise money in various ways. At this point we have raised $35,000, a long way from a million dollars. Once the money has been raised it will still take some time to make the virus.
As my son is almost three years old and potentially entering the last quarter of his life, I am humbly asking for any help you can provide. I am looking to raise that one million dollars and I am looking for media and social media exposure. I will never stop fighting for my son, and other children like him. If something else becomes available sooner then Dr. Walia's potential cure that can save my son, I am willing to donate into that as well. All money raised will be donated into a cure for Sandhoff disease whatever that cure is and I am asking that you join me in this fight.
Thank you again for taking the time to read this. Below are the links to our media coverage as well as to our donation sites. I can be reached at xx.kristen-[email redacted]
With Gratitude,
Kristen Sturgeon
Donation Sites:
www.youcaring.com/cureforkaiden
www.gofundme.com/jm6w8wm4
Media Coverage:
https://www.facebook.com/kristen.sturgeon.9/videos/10153519102517795/
http://ottawa.ctvnews.ca/mobile/brockville-mother-takes-dying-baby-to-parliament-hill-to-look-for-help-1.3681523
http://ottawa.ctvnews.ca/mobile/video?clipId=1263183
https://www.ctvnews.ca/mobile/health/a-matter-of-life-and-death-ont-mother-desperate-to-fund-treatment-for-son-1.3788085
https://m.facebook.com/sweetbuffalo716/posts/590986434580606
https://omny.fm/shows/on-point-with-alex-pierson/ontario-mother-desperate-to-fund-treatment-for-sic
https://m.facebook.com/sweetbuffalo716/posts/590986434580606
https://www.facebook.com/sweetbuffalo716/videos/591066114572638/
Kaiden Sturgeon-Harper was born on May 26, 2015. He was a typical baby full of smiles, laughs and love. There were a few medical issues right from the beginning but I was completely unprepared when at four months of age, Kaiden was diagnosed with a rare genetic disorder called Sandhoff Disease.
Sandhoff Disease is a neurodegenerative condition that progressively destroys nerve cells in the brain and spinal cord. With Sandhoff, a deficiency of the enzyme beta-hexosaminidase results in fat deposits in the brain and other organs of the body. The end result is blindness, deafness, seizures, paralysis and eventually death. This disease affects 1 in 500,000 children and Kaiden is the only child in Ontario as far as I know. The average life expectancy of those afflicted with this horrific disease is 2-4 years.
In November 2016 we began a drug trial through the University of Minnesota of the drug Zaveska. It isn’t a cure but it’s shown to slow the progression of the disease. I believe it has been crucial to extending Kaiden’s life. We recently received notice that our insurance company will no longer cover the cost of this very expensive medication (approximately $10,000/month).
Dr Jagdeep Walia is a geneticist and he is also Kaiden’s doctor. He has found a potential cure for Sandhoff Disease. It is a virus that is injected one time only intravenously. It may also reverse some of the effects of the disease but that is still unknown as Kaiden will potentially be the first human trial. The problem is that this one time treatment comes at an approximate cost of ONE MILLION DOLLARS. We have had a little media coverage and have been working nonstop to raise money in various ways. At this point we have raised $35,000, a long way from a million dollars. Once the money has been raised it will still take some time to make the virus.
As my son is almost three years old and potentially entering the last quarter of his life, I am humbly asking for any help you can provide. I am looking to raise that one million dollars and I am looking for media and social media exposure. I will never stop fighting for my son, and other children like him. If something else becomes available sooner then Dr. Walia's potential cure that can save my son, I am willing to donate into that as well. All money raised will be donated into a cure for Sandhoff disease whatever that cure is and I am asking that you join me in this fight.
Thank you again for taking the time to read this. Below are the links to our media coverage as well as to our donation sites. I can be reached at xx.kristen-[email redacted]
With Gratitude,
Kristen Sturgeon
Donation Sites:
www.youcaring.com/cureforkaiden
www.gofundme.com/jm6w8wm4
Media Coverage:
https://www.facebook.com/kristen.sturgeon.9/videos/10153519102517795/
http://ottawa.ctvnews.ca/mobile/brockville-mother-takes-dying-baby-to-parliament-hill-to-look-for-help-1.3681523
http://ottawa.ctvnews.ca/mobile/video?clipId=1263183
https://www.ctvnews.ca/mobile/health/a-matter-of-life-and-death-ont-mother-desperate-to-fund-treatment-for-son-1.3788085
https://m.facebook.com/sweetbuffalo716/posts/590986434580606
https://omny.fm/shows/on-point-with-alex-pierson/ontario-mother-desperate-to-fund-treatment-for-sic
https://m.facebook.com/sweetbuffalo716/posts/590986434580606
https://www.facebook.com/sweetbuffalo716/videos/591066114572638/
Organizer
Kristen Sturgeon
Organizer
Chesterville, ON