FACING THE STORM. TOGETHER.

“WE ARE FACING A STORM THAT MOST OF US HAVE LONG FEARED.” – Ray Nagin

After two years managing communications for the Red Cross, I know a thing or two about planning for storms. For example, be sure you have an emergency kit on hand, with water, non-perishable food, medications, batteries and

more in case you need to evacuate. Even so, despite the preparation by the city, emergency responders and others, Hurricane Harvey bore down on us with historic rain and flooding, causing untold loss and suffering. In time, the clouds broke, the light shined through and our city began to rebuild. Houstonians are resilient, but the road before us will be long.

Mackenzie turned 25 just a few days before the storm, and with the rain came a piercing metaphor. Since her devastating diagnosis of tuberous sclerosis complex (TSC) in 1993, we have researched, observed and adjusted countless treatments to manage a disease that causes thousands of benign tumors to grow on all of the vital organs, resulting in variations of epilepsy, autism, mental impairment, skin disfigurement and in some cases, premature mortality. Our emergency kit has consisted of doctors, specialists, 26,000 doses of medication during the course of 24 years, and more surgeries than I can recall at the moment. We are fortunate to have this kit, since thousands of those affected by TSC are misdiagnosed or do not have access to treatment. Sometimes we even forget about it altogether, breathing a sigh of relief while we enjoy a break in the clouds. Then the winds pick up and the storm returns.

Like the day I found Mackenzie face down in the dog’s water bowl, seizing. Had I not been there, she’d have drowned. Or when an emotion wraps itself around my heart, like it did a few days ago when I considered our two younger children are moving on as adults and Mackenzie still lives at home. Sometimes, the gusts rip through us in the form of another family’s tragedy, like that of a mom in London who kissed her son goodnight, only to find him in his bed the next day, having died of an apparent asphyxiation during a seizure. The stories come from around the world and across the country; storms that whirl and swirl and drape us in darkness, leaving us wanting for even a shred of light.

But if Hurricane Harvey and TSC have taught us anything, it’s that with every storm there is, at some point, the decision to move on. As with a carpenter rebuilding the foundation to a home once destroyed, doctors, specialists and educators research ways to control -- and someday cure – TSC. Even more, TSC is what’s called a “linchpin” disease, meaning the genetic pathway involved in it is the same pathway affecting over a dozen major diseases andisorders, including autism, epilepsy, cancer, and obesity. This is light not only for our daughter, but so many more.

Because of those who have moved forward in the face of TSC’s darkness, clinical trials of a new drug are showing reduced symptoms of autism in mice AND a reduction of seizures in humans. Afinitor®, a “miracle drug” available only in recent years, is saving Mackenzie’s life by helping to control her kidney and lung tumors. The once-deforming angiofibromas on her face are now controlled by Rapamycin cream. You don’t need to understand all these words but if you are one of the many people who have kindly contributed to our annual TSC “Step Forward for a Cure” walkathon over the years, YOU have played a role in these treatments because you have helped fund them. You have provided the respite between storms; you have given us hope.

“IT IS ONLY IN SORROW BAD WEATHER MASTERS US; IN JOY WE FACE THE STORM AND DEFY IT.” –Amelia Barr

Our family and friends know we only request donations once per year in conjunction with the “Step Forward to Cure TSC” walk-a-thon program which offers the opportunity to make an impact on the lives of those living with tuberous sclerosis complex as well as fund research into cures for other diseases like epilepsy, autism and cancer. The 2017 Houston walk was postponed due to the hurricane but is now slated for April 2018, where, like Houston’s resilient citizens who faced down a devastating storm – the TSC community will come together to fight a disease that has made life all too unpredictable.

Because, at the end of the day, we know that seeking light is a matter of choice. Because of you, we have that choice. Thank you from the bottom of our hearts for your consideration.

If you wish to contribute to this year's Step Forward for a Cure Walkathon, just click on http://giving.tsalliance.org/site/TR?px=1072045&fr_id=1491&pg=personal