Thursday, September 5, 2013

Step Forward to Cure Tuberous Sclerosis: A Cause Close to My Heart

In addition to my hobby of being a party planner, my full-time job is being a mommy to two beautiful boys. My oldest, Greyson, in whose honor my business is named, has a disease called Tuberous Sclerosis. Have you ever heard of it?
We hadn't either....until Greyson was diagnosed. 

This is the official definition: 

 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. 

Greyson is considered 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 just beginning to talk at age 5 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. 
We have been extremely blessed in the past year to have him be seizure free. That is a direct result of the fabulous care he receives at LeBonheur Children's Hospital. 
 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, blood transfusion, hospitalization, 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. 
In this blog, I have uniquely public forum to educate my readers about this debilitating disease. 

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. 

So, for my sweet baby, and for all the other people in the world with TS, I chair a walkathon every year in their honor. That walkathon raised over $50,000 last year. This will be my third year to chair, and my first time in the Memphis area. 
So, I am asking you readers to help me fund-raise for Greyson. 
As chair of the event, I am responsible for not only fundraising for my team, but also bringing in corporate donations and silent auction items. 

This year's walkathon is Saturday, October 19th at HW Cox Park in Collierville, Tennessee. 

Every single penny goes towards helping Greyson and others with TS. 
So, I am asking you to help me by donating here at Greyson's page: 

OR, donating a silent auction item!
If you are a party vendor, we would love to have some items from you!
Or even gift certificates!  People of all walks of life are at this event and everyone loves a silent auction!
Every donation is 100% tax deductible. 
(Illustration by the tremendously amazing and talented Michele at Intrigue Design Studio!)

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

Thank you so much for reading!

No comments:

Post a Comment

01 09 10