There is so much love in this photograph. A family wrapped around its youngest member as she celebrates her achievement in completing a second 5k — and improving her time. You might be thinking this isn’t such a big deal, but Taylor was blind and beginning to suffer additional effects of CLN1 disease (Batten disease). She was a winner that day, as she was so many other days in her short life.
Taylor’s efforts inspired her older sister to begin running. When Batten disease stole Taylor’s ability to run, Laura took the baton and ran for her. Laura is still running for Taylor today, even though Taylor left us 20 months ago.
Imagine the photograph without Taylor. There is such a hole in the middle of our family, and we’ll never be able to fill it.
You haven’t heard much from Taylor’s Tale in the past year. We’ve spent a lot of time trying to figure out life without Taylor. My daughter finished her race, but I’ll never say that Batten disease won. It’s still running, and Taylor’s family and so many others are now carrying the baton on her behalf. Batten disease only wins if we quit before we reach the finish line.
I searched “Tips for Winning a Race” and found the following suggestions from WikiHow:
- Go slow at first, then pick up your pace during the end of the race.
- Keep most of your energy until the last lap.
- Winning a race is a lot about the training and preparation as well as how skilled you are but that’s not everything. Winning a race has to do with the confidence, competitiveness and mindset of the runner, swimmer, biker, etc.
- Without the heart and the will to win one will never win any race.
A year ago today, I thought we were coming up on a significant mile-marker — not yet the finish line, but the glimpse of something worth cheering about. On May 21, 2019, Abeona Therapeutics made an announcement:
… cleared to begin a Phase 1/2 clinical trial evaluating its novel, one-time gene therapy ABO-202 for the treatment of CLN1 disease, following acceptance of its Investigational New Drug (IND) application by the U.S. Food and Drug Administration.Abeona Therapeutics
In other words, they were cleared to begin a clinical trial. Yet one year later, we are still waiting on the trial to begin. Word to the wise — just because you see the goal over the horizon, doesn’t mean you can slow down.
I’m looking at you, Abeona. I’m watching. And I’m not watching idly.
… pick up your pace during the end of the race…keep most of your energy until the last lap …
So, I’m asking myself, what is the mindset of top athletes? I believe it is the realization that whatever adversity they face, they still have the ability to be successful.
Taylor faced so much adversity — more than her fair share, for sure. Meanwhile, she never complained. She found her way.
We can find our way through this difficulty, too, because we have the heart and the will to win …
I’m a mother with high expectations (I’ve been in training for 14 years, and I’ve earned the right). From here on out, I intend to be fierce. Relentless. Take-no-prisoners tough.
For all of the children and families living with CLN1 disease, now and in the future.
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