Long Cuties Swim for The Long Cutie

Since our freshman year in college, several of my Indiana University Swim Team members and I have dreamed about participating in the Trans Tahoe Relay Race . This year’s event, a 10-mile swim across Lake Tahoe, from Sand Harbor to Skylandia Beach, is set for July 17.

This is the year! Five former teammates (and forever friends) and I have entered the race, three years after our collegiate swim careers ended.

And, while this year’s race is a fulfillment of one of our collective dreams, it is our hope that our participation in the event can help fulfill more dreams.

Give me three minutes to explain.

Soon after entering the race, we were introduced to “The Long Cutie,” Isla, a four-year old girl from Bury, England, who lives with the serious, life-threatening condition of Long QT Syndrome (LQTS). LQTS is a relatively rare genetic disorder that causes an elongation between the Q and T waves during a heartbeat. The lengthening of these waves can cause unexpected arrhythmias, cardiac arrest and sudden death. Generally, these arrhythmias are triggered by exercise, stress, and even startling, unexpected stimuli like horns and sirens.

Isla’s story, as told by her father, Dave, in both his blog, The Long Cutie, and Instagram account , inspired our entire relay team to dedicate our race entry to LQTS awareness and raising funds to support the continuing research and development of more advanced therapeutic treatments for this condition.

Growing up, my teammates and I dreamed of competing at the Division 1 level in college. We also had other childhood dreams, like going to magical places that all kids dream about. Isla’s childhood, however, has been dominated by visits to doctor’s offices, medical laboratories, and hospital suites. Yet, she lives life - like her father - with an unwavering strength of character and a grace that can only be described as inspirational. Check out that Instagram account for proof.

My teammates and I now have a new collective dream. Not only do we want to advance the awareness and treatment of LQTS, we want to help fulfill dreams that Isla and other patients who suffer from LQTS have never dared to dream. To do that, we need your help.

Your generous support can give the greatest of gifts to Isla - a chance to be a child, and to define her life, on her terms, rather than have LQTS define life for her and other patients just like her. And, along the way, you’ll push my team and I to swim like we’ve never swam before.

Please consider supporting our mission for Isla by donating and following our team, officially named The Long Cuties. For regular updates on our training progress and the race itself, you’re most welcome to follow along each of our team’s members at the following Instagram handles:

@taylortruex

@samlisy

@mackenzie.atencio

@rmatsumura4

@shelby_koontz

@leviticuspvm

Thank you for your support of Isla, as well as all those who live with LQTS every single day.

BIG shout out to our primary sponsor, LQT Therapeutics (website & Instagram ) for their generous support!