Dance with Me

By Laura Edwards

20120722-195412.jpg Five years ago, just days shy of the one-year anniversary of my little sister’s diagnosis, Mom and I flew to Rochester, NY for our first Batten Disease Support & Research Association annual conference. The airport shuttle dropped us off in a parking garage beneath the hotel, and we rode an escalator up to the lobby.

I will never forget the moment we stepped off that escalator into a sea of children strapped into wheelchairs with ugly IV bags and feeding tubes and beautiful yet broken eyes. Right then, standing in that lobby, more than 700 miles from my golden-haired, caramel-eyed sister with the sharp wit, sassy smile and broken gene, Mom turned, hid her face against my shoulder, willed herself not to cry and willed Taylor’s fate not to deliver on its horrible promise. That day, Mom vowed to never take Taylor to a BDSRA conference.

This year, the conference came to our hometown of Charlotte, NC. Affected children and their families and scientific and medical experts from all over the world spent four days in a hotel just a 10-minute drive from my parents’ neighborhood. But still, Mom held true to the vow she made in that hotel lobby in Rochester at the dawn of our journey.

The BDSRA conference always includes a Saturday night banquet that begins with a procession of affected children into the hotel’s ballroom followed by a dance (siblings dance to raise money for BDSRA, and others get in on the fun). I didn’t dance last night, even though I’m a sibling and my husband and dad joined Mom and me at the banquet. Instead, when I wasn’t working with a good friend there to film a video for Taylor’s Tale, I stood on the edge of the parquet dance floor and watched. I thought about how much Taylor, at home with a respite care worker, would have loved the dancing part of the banquet. I smiled at the memory of our friend Callie’s wedding in May, when Mom, Dad and Taylor ruled a small corner of the beach house’s dance floor, and smiled even more broadly at the image of my sister and my cousin Morgan in their matching flower girl dresses, twirling around the foyer of the Inn at Ragged Gardens at my own wedding exactly one month to the day before Taylor’s diagnosis.

As I watched, I noticed Emily, a beautiful, blonde angel of a little girl, ruling the dance floor much as Taylor did at her age. As my gaze followed Emily’s twirls and jumps and spins, it landed on her father, Tracy. In that moment, Tracy rocked to a much slower song than the one that played from the DJ’s speakers. He held Emily’s affected twin sister, Laine, in his arms.

I hate, hate, hate this disease.

That’s all.

ACTION ALERT: Help Children with Rare Diseases Gain Access to Lifesaving Treatments!

By Laura Edwards

I need your help with something.

If not for me, do it for Taylor.

If not for Taylor, do it for the thousands of other children who suffer from rare diseases and don’t have access to new drugs that could save their lives – not because scientists are incapable of developing those drugs, but because the current wording of a federal law makes it difficult for them to navigate the regulatory process and bring their discoveries to clinic, where they can actually help real, live people.

The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, would:

  • improve access to the FDA’s accelerated approval process for extremely rare diseases
  • provide a more predictable regulatory process
  • decrease associated costs and spur investment in the development of treatments
  • require the FDA to use the best science available, ensuring that treatments are safe and effective and reach patients sooner.

Watch this short video message from Tracy VanHoutan, founder of Noah’s Hope – an important partner of Taylor’s Tale in the fight against Batten disease and other rare diseases – to learn more about why you should support the ULTRA Act of 2012.

In less than five minutes, YOU can help thousands of children like Taylor. Please follow the link below to contact your legislators, asking them to support a NO-COST bill that would accelerate the rate at which we are able to get lifesaving treatments to children with ultra-rare diseases. Ask your friends and family to do the same, because we need 5,000 people to sign on in support of the ULTRA Act of 2012 prior to Rare Disease Day (Feb. 29, 2012)!

Support the ULTRA Act of 2012

Note: When you click on the link, you will be redirected to the website of our partner, the Rare Disease Legislative Advocates (RDLA).

  1. Enter your contact information.
  2. Click the button to review and submit a message to your legislator.

*Your contact information will NOT be sold or used for any other purpose.

Visit the RDLA Site Now to Show Your Support