Trading Punches

By Laura Edwards

Tonight, Donya – the mother of a 4-year-old little girl – posted the following message on our Facebook page:

I am the mother of Ali, whom is 4 years old. she was diagnosed with Infantile Battens on July 15, 2011. I am writing to you to express my sincere gratitude for all you efforts in raising funds for research with Battens disease. I often feel great despair as i am a single mom trying to raise funds & awareness as to the impact i am making. I praise the Lord as i read all the great discoveries that you have funded for this disease. This gives me great HOPE & i am so thankful for Taylors Tale! God bless you for bringing us one step closer to the CURE waiting to be found!

I don’t believe any two experiences are identical, but nearly six years after Taylor’s diagnosis, I still remember the emotions I battled on a daily basis as I struggled to comprehend our tragedy – and how quickly and dramatically our world shrank as we searched for other families that understood – or at least had the ability to offer some semblance of a map for the dark, cruel world into which we’d fallen overnight.

Six years isn’t a very long time in most cases, but it’s a long time to fight Batten disease, because fighting Batten disease is like getting up every morning, heading straight into a fistfight, losing badly, standing up slowly, staggering into the corner, slumping down on the stool for a quick rest and then stumbling back into the middle of the ring to do it all over again. It’s crazy. But we do it – I do it – out of hope that every once in awhile, I’ll get in a good lick or two, and maybe – just maybe – when I’m all bruised and bloodied, I’ll manage to land a surprise haymaker and take down the disease that dared to take my sister away from me.

Donya, thank you for sharing the impact Taylor’s Tale has had on your own very personal fight with Batten disease. Just five short years before your daughter’s diagnosis, my family received the same shocking diagnosis of infantile Batten disease. The doctor said that nothing could be done and sent us home to make happy memories with my little sister while we still could. But that wasn’t good enough for us.

I’ve taken a lot of shots over the past six years; the road ahead will be more difficult than any I’ve traveled before – and I still haven’t landed that haymaker. But I don’t want any child or family to have to settle for a world in which there are no answers, and as long as I’m still standing, I’ll keep fighting on behalf of children like Ali and Taylor!

2 Comments On “Trading Punches

  1. Nicki Benkula Keller Reply

    Awesome! My husband and I have been talking over the last few days about how to “fight” against this disease. We haven’t done much since our son was diagnosed except take care of him from day to day, but it has started to feel like we have given up, we’re just holding on until that final knockout. But if we hope for any sort of a cure we have to help more, we’re trying to get it together, get back up and get some of our own punches in there too!

    1. Member Laura King Edwards Reply

      Nicki – thanks so much for sharing a glimpse of your family’s own fight. I’m so sorry to hear that your son has Batten disease, as I know too well the tragic toll it can take on a family as well as the children it affects. But I also believe in miracles – both great and small – and since Taylor’s diagnosis, I’ve learned that one of the secrets to staying strong in the face of something as tragic as this disease is to concentrate on pinpointing at least one good element of each and every day to help get through the next. That element can be amazing in nature – such as a medical breakthrough – or seemingly ordinary – such as a beautiful sunrise. They’re both miracles in their own way.

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