Nearly three years ago our son Jackson Thomas was born. DNA testing revealed to us that he was a carrier of the Fragile X genetic mutation. Having had experience with two nephews that are affected, we knew something of the challenges ahead. I spent each night falling asleep to thoughts of the things he would not ever be able to do. Fragile X has a broad spectrum of symptoms that can range from mild to severe intellectual and physical development issues. Would he ever talk? Would he ever run? Will his classmates make fun of him? Will he work? Can he support himself if anything were to happen to me? These thoughts are persistent and terrifying. The only thing that seems to help, is watching my son Jackson overcome any and all challenges that are presented to him. He attacks each day with a calm determination to be happy, to lead a simple and fulfilling life that is full of laughter, things he loves, and an unwavering determination to convince me that his disability will not stand in the way of his living a life of happiness and meaning. He has taught me the meaning of courage, and shows everyone that he touches how to make the most of any circumstance.
There is good news for Jackson and the more than 100,000 American families affected by Fragile X Syndrome and the nearly 1,000,000 at risk for developing other conditions caused by the Fragile X mutation. New drug therapies currently in human trials are showing great promise in helping to better coordinate the brain mechanisms that cause the symptoms of Fragile X. We need to fund the effort for further studies and fast track the availability of these treatments. The path to a cure is clearer everyday.
Please join my family and me for the Jackson Laughs fundraiser to support the National Fragile X Foundation. This organization is coordinating research, legislative efforts, and support services. Your support translates directly to getting us closer and closer to a cure. On April 9th 2011 at Kent State University’s Dix Stadium, there will be a 5k, and a 25k. You can register for the event at www.active.com under Jackson Laughs, or you can go directly to www.jacksonlaughs.com. Can’t make the race and would still like to support us. Visit www.fragilex.org where you can donate directly. Our goal is to raise $100,000. Please come out to support the cure for Fragile X.
Hello, Natalie and Ben!
Although I’m no longer in Ohio, I am going to try to schedule a trip back this spring so that I can participate! If not, you can definitely count on me to donate.
What an amazing boy!
You and Jackson and your families are in my thoughts and prayers…
Thanks Emily we would love to see you there!!
Mr. and Mrs. Koberna- I would like to have Kent City Schools post this on their website to all KCS staff. Would that be ok with you? I have registered and am looking forward to a wonderful day:) Giny Harvey
Please do and thanks for the support. We will drop off posters and signup sheets. Thanks also for taking care of Jackson. You guys are the best
Ben
I was wondering if you were interested in doing a guest blog post on my web-site. I really love reading your site and I know many my subscribers would, too. If little else, you should get a couple of extra readers for your blog!
Sure send me the details
I just happened to find this link. It is a little too late, but was wondering if you could add me to an email list, so I can do this next year (if you do this yearly). My son, Payton has FX. He is 8 years old, and I would love to help raise money for him!
Kristin,
We will absolutely keep in touch as we will be having additional events throughout the year. I wanted to extend an invitation to a small casual reception the night before at the night before. It is April 8th from 5-8pm. Robert Miller from the National Fragile X Foundation will be there, as will Dr. Elizabeth Berry-Kravis a leading research scientist from Rush hospital. It is a rare opportunity to talk to two of the giants in the fight for Fragile X research and advocacy. If you can’t make it, please call me anytime we would love to have Fragile X parents on our advisory board. Best wishes and hopefully you can make the Friday reception.
Ben
330-328-0374
Ben-
Sorry we can’t make it to the race but best wishes and thank you for all your efforts in raising money for our kids! We live in Richfield Ohio with our 23 yr. old son who also has Fragile X Syndrome. We’ve been through many “challenging” experiences raising him over the years as I’m sure you will experience too. Hopefully we too have helped in breaking ground and making paths for other special needs FX kids as they come along. Its amazing for us to see just how much more information is now available for teachers, therapists, and medical professionals today than when our son was diagnosed just 20 years ago. I’m happy to tell you that our experiences with school systems and transitioning into the adult community has been very positive which certainly wasn’t the case for earlier generations. Intolerance and cruelty is no longer acceptable towards special needs children and adults. We’ve found nothing but kindness, acceptance and help along the way, both from fellow students and adults. Its equally hopeful and encouraging to see involved parents such as yourselves promoting awareness and helping to raise money for research into this genetic disorder. Great strides have been made and will continue to me made! Again, best wishes and thank you!
Ileen
Ileen,
I can’t tell you how much your comments mean to Natalie and I. We are just starting this journey and while our son Jackson seems to be handling things well we are filled with fear of the unknown. Some of the greatest fears center around how our son will be treated when we are not there. Hearing that your experience with public schools has been positive means the world to my wife and I. Please stay in touch. If you can’t make the race on Saturday, I would like to invite you to a casual reception the night before. It will be at the Rusty Nail from 5-8 on Friday April 8th. Robert Miller from the National Fragile X Foundation will be there, as will Dr. Elizatbeth Berry-Kravis from Rush hospital. Please come, we are providing food and a meet and greet, and would love to have you and your family attend. If you can’t come please stay in touch and best of luck in the future. Call me anytime.
Ben
330-328-0374
Mr. and Mrs. Koberna,
I am sorry that I will be unable to attend the walk. I did make a donation. Jackson is a beautiful, happy, determined little boy. He makes me smile everyday.
a big hug from italy.
ciao nello
Mr. and Mrs. Koberna,
I contacted David Salomon and Teddy Palmer from the National Fragile X Foundation to be sure that the donation would be credited to Jackson Laughs.
This was their response.
Hi Susan.
Thank you for going through the trouble to contact us. I will credit your donation to the “Jackson Laughs” event and notify Ben Koberna. Thank you for your support.
Sincerely,
Teddy Palmer