It's Worth A Try

To Emily Hayden
Office of Rep. Brad Ellsworth
8th Congressional District, Indiana

Dear Ms. Hayden,

I'm going to do something a little bold. Attached to this e-mail is a 30+ year old photo of me with your congressman, when we were just kids. When I recently learned that he is indeed a congressman, the first thing I thought was "maybe he'll remember me, and maybe he'll take an extra second to learn about our cause."

On February 24, you met with Susan Campbell, who is one of your constituents. She told you of a horrible disease called tuberous sclerosis complex, and shared with you the story of Taylor Skelton, who is also your constituent. Very briefly, I will tell you our story:

Mackenzie Joy Mudd was born on August 16, 1992. She was absolutely perfect in every way, until age 1, when she started to have seizures. An MRI determined the cause to be tuberous sclerosis complex, a genetic disorder causing tumor growth on all the vital organs, resulting in varying degrees of epilepsy, mental retardation, autism, skin disfigurement, vital organ malfunction and premature mortality. Indeed, during the past 16 years, our Mackenzie has had more than 2,000 epileptic seizures, 12 surgeries, and has taken over 40,000 doses of medication to control her epilepsy. She is also moderately mentally retarded and will never be able to live on her own. We love her dearly and we're blessed with three other children. Although ours is a happy home, our hearts break for our daughter and thousands like her who must suffer from this relatively unknown but devastating disorder.

Susan Campbell said you were responsive to our request that Congressman Ellsworth sign the dear colleague letter requesting $15 million in funding. To that end, I'd like to follow up and reach out to the Congressman myself, asking that he sign the letter on our behalf. Since the beginning of our congressional outreach in 2002, we have raised $29.5 million in funding that will benefit not only tuberous sclerosis research, but related disorders like epilepsy, autism and cancer.

Please know that I have no underhanded intentions here. During our February trip to DC (I met with various Texas legislators), my TS colleagues kept joking about my "friendship" with the Congressman. I have no friendship with the Congressman, as I have not seen him since I was 18 years old! However, when you're the mother of a child who suffers, you'll do unusual things like dig up an old photo taken during Spring Break in Daytona Beach, circa 1979...with the hopes that one more person may support your cause.

And I hope he will.

Thank you for your time in reading this note. I wish you and Congressman Ellsworth's office all the best as you serve your constituents and support your community in a meaningful way.

Sincerely,
MaryJane Mudd
Mackenzie's mom
Tuberous Sclerosis Alliance Board of Directors

May 2010 Update: Congressman Ellsworth not only signed our letter, he sent his own personal note to the Appropriations Committee on our behalf. The Tuberous Sclerosis Alliance is greatly appreciative of his support, and so is this special needs mom. Best wishes with the Senate race, Mr. Ellsworth!