Janesville teen hopes to realize dreams after treatment in China
To help
A benefit to raise money for Kyle Knopes’ trip to China for stem cell treatment starts at 2 p.m. Saturday, May 23, at Countryside Inn, 1801 E. Highway 59, in Newville.
The event will include a pig roast, auctions, raffles, door prizes and a bake sale. Manberries, Rollin Rock, Junk Male and Downfall Live will provide live music all day.
Donations also can be sent to the Kyle Knopes Benefit Account at M&I Bank, P.O. Box 5000, Janesville, WI 53547.
Photo
Kyle Knopes, a 16-year-old Craig Sophomore who has spinal muscular atrophy type 2, works on his algebra II homework at his Janesville home.
Photo
In his Janesville bedroom Kyle Knopes has a football signed by the entire Rock County Gladiators team.
Photo
Kyle Knopes
JANESVILLE — Sixteen-year-old Kyle Knopes has high hopes for his future—attending college and possibly becoming a lawyer or an architect.
He needs his independence, but his body disagrees with his dreams.
That’s how he describes the reason he’s planning to go to China next month to receive seven umbilical cord stem cell injections to improve his Type 2 spinal muscular atrophy.
Kyle is diagnosed with the genetic neuromuscular disorder that affects the part of his nervous system that controls voluntary muscle movement. He has never walked or crawled and has been in a wheelchair since he was 18 months old.
The Craig High School sophomore is preparing to take his finals early because he will miss the last two weeks of school. His full schedule includes advanced placement U.S. history, biology honors and algebra 2.
Kyle needs assistance with daily activities from brushing his teeth to eating. He has a rod in his back to help him sit up, and his muscle weakness prevents him from doing things others take for granted. His body holds him back from his love of sports.
The treatment in China could improve his weaknesses and slow the progression of the disease, which will continue to weaken his muscles and eventually shut down his vital organs.
But he’s facing the treatment with what he hopes are realistic results—improved head and neck control, better upper body strength and the ability to sit up straighter by himself.
“I’m not anticipating walking,” he said.
Kyle tried experimental medication for six months last summer, but it didn’t help, and he had to stop because of side effects. Then he heard about Brandon Meinke, a Janesville boy whose SMA conditions improved after receiving stem cell injections in China last fall.
“I think I decided that day,” Kyle said of wanting to go to China.
The Knopes followed Brandon’s blog while he was in China and have been talking with Brandon’s family about the journey. Kyle will receive treatment, which isn’t available in the United States, at the same place Brandon did: Qingdao Cheng Yang Peoples Hospital in Qingdao, China.
Accompanying Kyle in China will be his mom, Penny, and his brother Andrew, 20, who is studying nursing in Milwaukee. His father, Steve, will hold down the fort until they return more than five weeks later.
But first, the family faces the $30,000 cost for the treatment, plus airfare and living expenses in China. Family and friends have been supportive, Penny said, but the family also is seeking community support at a benefit for Kyle on Saturday, May 23 at Countryside Inn, Newville.
The family has an account to receive donations at M&I Bank, and they’ve sent a letter seeking support from friends and businesses.
“This treatment will provide our son a better quality of life, which is ultimately every parent’s goal,” Kyle’s parents wrote in the letter.
Jun 3, 2009 at 2:48 p.m.
Suggest removal
Kyle,
Best wishes on your treatment here in Qingdao. For more information on China's Sailing City and Cheng Yang People's Hospital please refer to the following links:
http://www.ThatsQingdao.com
http://www.thatsqingdao.com/listings/qin...
May 29, 2009 at 1:43 p.m.
Suggest removal
How are the socialists beating the capitalists?
May 29, 2009 at 11:50 a.m.
Suggest removal
Kyle,
I wish you the best of luck on your journey to China. My thoughts and prayers are with you. You are one of the most inspiring and intriguing young men that I have met in a long time and wish the best for you in all that you do! I'm looking forward to helping you find that first job when you return!
Good Luck,
Krissi
May 18, 2009 at 11:51 a.m.
Suggest removal
Kyle, I wish you the best of luck! I hope that you are able to benefit to the fullest from your treatments. You will be in my thoughts and prayers, have a safe trip!
*justsaynotomath: First of all I feel inclined to defend the family in saying that I am sure they have done plenty of research. I know the family of Brandon (the other boy mentioned in this article) very well, and I know that they did a lot of research as well. Secondly, I think you should do your research a little more. The child that suffered from a benign tumor was taken to a hospital in Moscow, the hospital in China is much more advanced and a leader in this treatment. There are obviously some risks, I don't know of a single medical treatment that doesn't come with risks. Thirdly, waiting for the treatments to be available in the U.S. is not going to eliminate any possible risks, nor will the treatment be cheaper.*
May 18, 2009 at 10:45 a.m.
Suggest removal
I have no problem with adult stem cell research, placental stem cell research, umbilical cord stem cell research, and baby teeth/wisdom teeth stem cell research. But I do think embryonic stem cell research is unethical.
.
I think it's misleading to just use the term "stem cells" since no one knows exactly what kind of stem cells are being talked about. Kudos to the Gazette for actually clarifying.
May 18, 2009 at 10:44 a.m.
Suggest removal
fool_on_the_hill,
I'm sure you know what I meant by "in this case." I was referring to the type of stem cell research being done and not an entirely unrelated topic.
May 18, 2009 at 10:29 a.m.
Suggest removal
Best of luck to the Knopes family while they are in China! I hope that the Gazette will do an update once they come back or maybe while they are even there.
May 18, 2009 at 10:28 a.m.
Suggest removal
Kyle,
Good luck and godspeed.
There is a researcher, Clive Svendsen , at the UW that has just developed a research model for your type of disease. I hope his efforts can help you.
your bravery inspires me. Thanks for sharing your story.
May 18, 2009 at 8:14 a.m.
Suggest removal
To: Gazette Staff
Reference to: Kyle Knopes
.
Please keep this story updated on a regular basis.
It is important that we know how his treatments are progressing.
.
Thank you
Your Friend
Wesley
May 18, 2009 at 2:38 a.m.
Suggest removal
Kyle & Penny~
I do not know if you remember me, but I used to be your CNA about six years ago. I had to quit when I found out about my daughter's terminal illness. I am now a RN.
I have often thought about you and wondered how you were. I will continue to have you in my thoughts and prayers. I hope I can stop in at the benefit next weekend.
Best wishes Kyle!
~Cheri
May 16, 2009 at 2:14 p.m.
Suggest removal
hey kyle i dont know you , but i admire you and wish you the best of the best.may you have a safe trip and your wishes and dreams come true.
May 16, 2009 at 2:03 p.m.
Suggest removal
good luck Kyle may all of your wishes come true, you have more ambition that most :)
May 16, 2009 at 1:41 p.m.
Suggest removal
Good luck Kyle...you know I love ya kiddo...it will be strange not swimming with you in june...but you are a great young man and you deserve nothing but the best!!! You are like my little brother and I would not have it any other way!!! See you Saturday!!!
May 16, 2009 at 12:41 p.m.
Suggest removal
DrTalk, your "in this case" qualifier did not go unappreciated. :~) Incidentally, China is also leading the way in adult stem cell treatments for Parkinson's disease.
May 16, 2009 at 9:40 a.m.
Suggest removal
Good Luck, Kyle!
May 16, 2009 at 8:26 a.m.
Suggest removal
wesgonsin...I couldn't have said it better myself. For such a supposedly cutting edge country full of smart, independent people, it's really scary that we can't get out of the dark ages. Every time a disclaimer comes on the television saying 'don't do this at home' I get sad. Are we really that stupid that the president has to tell us to wash our hands? How many people could be helped by these procedures if we would just wake up and use the knowledge and technology we already have?
May 16, 2009 at 7:58 a.m.
Suggest removal
I harbor no disdain against Christians. But I will take issue when they get all radical with their beliefs. Let's just get that much clear.
I'd like to think of MYSELF as a Christian.
And being a believer, I think God would want us to use embryonic stem cells to help our fellow man.
Lot of false misconceptions surrounding this issue. It's not like they want to rip a baby out of the mothers womb two weeks into her third trimester.
But if they're going to let millions of eggs just sit and rot for 20 years in liquid nitrogen before they incinerate them in biohazard bags anyway, why not take advantage of the gift God gave us?
May 15, 2009 at 11:48 p.m.
Suggest removal
Support Kyle! If you are in Janesville/Newville area over Memorial Weekend, come have fun and support a good cause.
Facebook @ http://www.facebook.com/inbox/readmessag...
Other @ http://www.kutterharley.com/event_detail...
May 15, 2009 at 11:48 p.m.
Suggest removal
wesgonsin,
The article said he's receiving "umbilical cord stem cell injections," not embryonic stem cell injections. Your disdain for Christians in this case is completely unwarranted.
http://www.answersingenesis.org/articles...
May 15, 2009 at 11:19 p.m.
Suggest removal
You are so correct wesgonsin. Hang in there Kyle. You can do it man!
May 15, 2009 at 9:59 p.m.
Suggest removal
Kyle,
Congrats on finding something, somewhere that could help you. We saw you at the Beloit Titans-Rock County Gladiators game, but I didn't recognize you!
You surely are an inspiration to people.
May 15, 2009 at 7:25 p.m.
Suggest removal
Kyle you get my best wishes.
May 15, 2009 at 6:50 p.m.
Suggest removal
Pity that they have to fly to China for this treatment.
A treatment that, even if it were legal here in America, would cost closer to $175,000.
The bleeding heart Bible thumpers in the United States are the only thing holding us back from being the 'Go To' country for experimental medical treatments.
We could be to life saving medicine what the Middle East is to oil.
But, oh no....Let Congress fight over this issue for the next thirty years as thousands of American citizens die a painfull drawn out death.
I just betcha that Ted Kennedy is all for stem cell research, now that he has a big inoperable tumor growing in his brain.
Before you post a comment, consider this:
Note: GazetteXtra.com does not condone or review every comment. Read more in our User Policy AgreementPost Comment
Commenting requires registration.