Our son Luke has Tuberous Sclerosis.  Tuberous Sclerosis is a genetic disorder that causes tumors to grow all throughout his body. Luke has tumors in his brain, heart, eyes, kidney, and face.  Luke also has been diagnosed with autism, epilepsy and developmental delay.   Luke is now 14 years old and in those 14 years we have seen tremendous progress in the cause for Tuberous Sclerosis.  When Luke was born in 1996, there wasn't even a genetic test for Tuberous Sclerosis; there is now a genetic test and we subsequently discovered that Luke did not inherit Tuberous Sclerosis from his dad or I.  This test enabled us to then decide to add our fabulous Jake to our family. 

The most current progress in Tuberous Sclerosis that has directly impacted our lives is the treatment of a drug called Rapamune.  Luke was diagnosised with a giant cell astrocymota tumor in his brain in 2009.  Luke is one of the few who are able to receive Rapamune now to shrink this giant cell astrocytoma!  But not only is it shrinking the giant cell astrocytoma - it is shrinking every tumor in his body!  This is a miracle for US!  He will now be able to avoid additional plastic surgery on his face, kidney surgery, brain surgery and more! 

I share these stories because the contributions that are made for Tuberous Sclerosis are making a difference and having a direct impact increasing the quality of life for these children and families!  Tuberous Sclerosis research makes an impact on autism, epilepsy, cancer, behavior, brain, heart, kidney and more!  If I had a ribbon for every cause that Tuberous Sclerosis impacts, I would be covered in them.  You can learn about Luke's journey with Tuberous Sclerosis by going to his website at http://www.lukets.org

Please help us!  We are having a walk in Salt Lake City on Saturday, May 8th at 10 am at Liberty Park!  Hardly anyone ever shows up for the walk.  It is usually a sad day for Tuberous Sclerosis families.  Tuberous Sclerosis is a lonely disease, it is a chronic disease and lasts the entire lifetime.  It isn't like breast cancer that is more acute in nature and everyone comes out in droves to support.  Tuberous Sclerosis children can be difficult and sometimes people disappear because that feel uncomfortable.  But we truly truly need your help and support.  

Please come! and if you can't come then please make a donation.  If you can attend then register for the walk above by clicking the icon above that says "Join this Team" .   It is hard for Tuberous Sclerosis families to pull together because each child is affected so differently.  Some children have feeding tubes and never reach a developmental level higher that a 6 month old with other children have maybe nine brain surgeries to control seizures, some children have severe behavior issues and some children are so mildly affected that you wouldn't even know that anything was wrong.  It is hard for such a diverse group to pull together because of the nature of the impact.  We are also all so tired and have so much to do to take care of our children.  

Please help us tired families and come out in huge droves of support.  We need you and love you! 

Thank you for visiting my Luke's Personal Tuberous Sclerosis Fundraising Page. The funds raised by this page benefit the National Tuberous Sclerosis Alliance for research with some funds earmarked to benefit our local families to educate the parents about Tuberous Sclerosis.  Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to Luke's Tuberous Sclerosis fundraising efforts. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

With all the love and appreciation from the deepest parts of our heart!

Deanna, Luke's mom

Todd Runyan, Luke's dad

Cory Wall, Luke's step-dad

Blanca Runyan, Luke's step-mom

Nick Runyan, Luke's older brother

Jake Runyan, Luke's younger brother

Emily Wall, Luke's step-sister