Cure for Kaiden
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 firstname.lastname@example.org
Hello I am Kristen, Kaiden's momma. I just want to take a minute to tell each and every one of you just how appreciative and thankful I am to see all of you coming together to help out our family. I can't thank you enough! Truly means so much to us to have all of your kind words, support, and donations. ❤️
hello my wife and 2 year old son are in sum what ur same position, try and find RSO from cannabis it's a natural oil that kills bad cells and stops and prevents seizures. my son is 1 in 1,000,000 to get chordoma cancer. look this stuff up lease Rick Simpson Oil
Why have we not gone to the media? Why have we not gone to Justin Trudeau with this huge problem? Our Prime Minister gives all kinds of money to other country when there’s a disaster so why couldn’t he do something for this little boy of ours right here in our country. ( Our people)???
I was wondering as this was made in 2015 and you said at that time that he was 4 and almost at the end of the time they said you'd have what has happened with everything? We're you able to get him the help he needed? Is he still alright and any other updates?
A todas las personas que hoy me conocen saben lo que somos cada uno de nosotros tenemos un corazón grande porfavor saquemos algo de nuestro esfuerzo para darle la esperanza a esta familia hoy por ellos mi jente y mañana por nosotros porfavor a todos con solo 5 dólares hacemos la diferencia gracias Dios los bendiga
Most if not all health care is covered in Canada.. ..are you in search of a cure in the states ?because if so I understand the need to raise money....but if this is all in Canada seeing as you live in Ontario.. why raise 1million if our system is free? Sorry for the rant but I've been sick all my life and have been olin and out of hospital my whole life and never did a go fund me ....my prayers are with sweet kaden and I hope u get what your searching for and find a cure .... sorry if this message was insensitive to you family and friends but I had to say something
I hope you are holding up okay... Much love to you ♥
im praying for you
I just wanted to let you know we are praying your little man. I have children of my own and all I want is for them to grow up happy and healthy but I feel this way for every family and for every child! I’m sorry your going through so much I’d give up everything to save every child in this world if I could. I pray he gets the money he needs!
I am including a link to the Prime Minister's office and the Health Minister if you would like to send a message to urge the Canadian Government to push ahead with the trial and assist in funding. Please also consider contacting your local media to spread the word. Anything is possible! https://pm.gc.ca/eng/connect https://pm.gc.ca/eng/minister/honourable-ginette-petitpas-taylor