Our Friend Dakota

I'm sure everyone that reads this blog is used to hearing about (or living with) Rett Syndrome. But today I wanted to take a minute to introduce everyone to our friend Dakota and her family. Dakota is a classmate of Brooke's and is battling Tay-Sachs disease. Never heard of Tay-Sachs? I hadn't either until I heard about Dakota. So I wanted to pass along an email I received from her mom and dad with some information and links to the Cure Tay-Sachs Foundation website.

Please be sure to watch the video - it's very powerful. And for those of you that feel you have a vested interest in Brooke or Rett Syndrome and have committed your donations or fundraising efforts to that cause please think of this - medical research committed to finding a cure for one disorder has the potential to help many others. If you spend a little time on the website you might be surprised by some of the similarities shared by the two disorders. You never know how all of this will ultimately connect.

One thing I do understand is how important it is too make people aware of these "unheard of" disorders. Dakota's parents have done an amazing job getting the foundation off the ground and getting the word out. I'm so proud of this family - they really do inspire me to think of the difference just one mom, one dad and one sweet little girl can make in this world. I know I can take a lesson from that, I'm sure we all can.


Dear Friends,

As many of you know our beautiful little girl Dakota continues to battle Tay-Sachs disease. We have created a video to introduce the world to our very strong little girl. Dakota is now 8 years old and was diagnosed with Tay-Sachs disease just over two years ago. Tay-Sachs is a genetic disease that has no treatment or cure, and is ALWAYS fatal in children. Dakota risked her life nearly two years ago when she went through a very painful and complex cord blood transplant where all her blood was replaced with new blood, with the hope of eliminating the disease. The transplant may have helped, but the disease is still there. Dakota has been nicknamed the “Hope Child” by other Tay-Sachs parents because of her courageous battle to beat this horrible disease. But the clock is still ticking….

We have medical specialists all over the world that we are in constant communication with that have assured us that the cure is within reach! The challenge is the funding necessary to convert theory into clinical application. We have become involved with the Tay-Sachs Gene Therapy Consortium that has created an international team of experts dedicated to converting hopeful animal models into useful human clinical trials. We have no choice but to take matters into our own hands and raise the monies needed to potentially save the life of our daughter and her many terminally ill friends around the world. We need to find a cure for this disease so future generations of children like Dakota and families like ours don’t have to endure this agony.

With the help of our family and friends, we have started a fund raising campaign called “Dakota’s Dream,” designed to raise money for the Cure Tay-Sachs Foundation (which is a 501(c)(3) tax exempt foundation). We are declaring November “Dakota’s Dream” month, where corporations, schools and churches from all over are collecting money on our behalf. On Saturday, November 24 we are organizing children of all ages to collect money in their neighborhoods to support Dakota’s Dream. We hope to have 1,000 kids each collect $100 on this day. Hopefully we will surpass that number of kids helping other kids.

Please take 5 minutes of your valuable time to watch the DVD that was made to give you a small understanding of the magnitude of the situation. Yes, we need money. But more importantly we need to educate people about Tay-Sachs disease. After you view the video, please feel free to pass this e-mail along to anyone and everyone you know. The disease is found in every part of the world, among all races, religions and genders. This is one disease that we CAN and WILL find a cure for in the next few years - but only with your help.

Thank you for taking the time to listen. Please watch the video and visit our web site for further information about Tay-Sachs disease and how you can be a part of Dakota’s Dream on November 24, 2007. Thank you and God bless.

Link to Dakota’s Dream video: http://www.curetay-sachs.org/dream.shtml

Link to Cure Tay-Sachs Foundation web site: http://CureTay-Sachs.org

Ken and Julie Bihn
Olmsted Falls, Ohio