Sunday, June 5, 2011

Step Forward to Cure Tuberous Sclerosis--A cause very special to our hearts

For those of you who regularly read this blog, you will know that there is a cause that is very special to me.  
That cause is the Tuberous Sclerosis Alliance. 
The Tuberous Sclerosis Alliance is a huge part of my every day life because my son, Greyson, was born with this disease. 
For those of you who are not familiar with Tuberous Sclerosis, this is the official definition of the disease: 

Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette's syndrome. 
The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.

When Greyson was born, he was perfectly healthy. We had no indication that anything was wrong until he was two months old and began having infantile spasms, which are a particularly devastating type of seizure in infants. He has struggled with seizures almost every day since. 
We had never even heard of Tuberous Sclerosis. 

Greyson is considered mildly to moderately affected by TS, which results in him having intractable (uncontrolled) epilepsy and tubers (or benign tumors) in his brain, retinas and kidneys and learning disabilities. He is almost completely non-verbal at the age of three and attends a special needs pre-kindergarten within our local school district. He is also on 2 different seizure medications and a hypertension medicine daily. 
 In addition to Tuberous Sclerosis, Greyson also has polycystic kidney disease, which is linked closely with TS because of the proximity of the genes in your DNA. At some point in Greyson's life, he will most likely be faced with a kidney transplant or brain surgery.  
In spite of this, Greyson is a trooper, inspiring everyone he knows on a daily basis. I have never met a stronger soul than him. I am not saying that just as his mother, but as someone who has seen every blood draw, sedation, EEG, MRI, and other invasive testing he has gone through. 
He is the absolute light of our lives. We are honored to be his parents. 
And any parent who as seen their child suffer will know that is the worst thing that you could ever imagine.
But, there are many who are much worse off than him. Some patients have hundreds of seizures a day and are severely mentally and physically delayed. 

I write this not soliciting pity, but in the hopes that spreading the word about Tuberous Sclerosis and educating those who are not familiar with this disease will raise the profile of the TS Alliance and therefore help them help Greyson, and the millions of others with TS. 

There is NO CURE for Tuberous Sclerosis. 
And it can happen to anyone. 
Two babies are born every day with TS in the United States. 
But, we hope to change that. 

For the past three years, my husband and I have been involved in our local Middle Tennessee chapter of the TS Alliance, helping to raise funds through their annual walkathon. 
Last year, TEAM GREYSON was the #1 fundraiser for our walkathon, raising over $5000 for the TS Alliance. 
This year, we hope to exceed that. 

  This year, I was so honored to be asked to be the chairperson for our local walkathon. 
This year's Step Forward to Cure Tuberous Sclerosis Walkathon--Middle Tennessee Chapter, will be held on Saturday, October 22nd, 2011 at Centennial Park in Nashville. 

What I am asking my readers is to please help us out!
Greyson has a fundraising page all of his own, which you can access HERE. 
All donations are 100% tax-deductible. 

But, in addition to the monetary fundraising, I am looking for silent auction items and in-kind donations. 
In-kind donations can range from anything from a case of bottled water to a big-ticket silent auction item to volunteering your time!

But, more importantly, I am asking you to share this page. 
Raising AWARENESS is just as important as raising money. 

Thank you for reading!



  1. What a great mom and an adorable little boy. My grandaughter, 4, has just been diagnosed with TSC. You are in my thoughts and prayers.

  2. i know a girl named abby she is 17 and has been throu so much she has had brain surgerys and is currently going throu lung surgery. this will be here thrid time doing this syrgery we have all been praying. she proves to us that there is hope and mircles do come true bc the docters sadui she wouldnt live past 2 and her sje is tpday still with us. while she was in the hospial she meet a 50+ Lady who has the same thing as her and she has been throuthe same surgerys and she is still alive that gave abby more hope. so there is always hope in these kind of things. and my prayers go out to this fasmily and i hope they are as lucky as we are to still have Abby in our Family (:

  3. I found your blog because of a pin of your honey-do shower decorations. While looking through your parties links I saw this post. Had no clue I would find this. I have a son that is 25 yrs. old with TSC. It was very rarely identified back when he was diagnosed and he is very mild. He is actually a mutation. Thank you for creating awareness and praying for you and your family.


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