Sunday, February 07, 2010



One of the first Batten parents that I "met" in the days following Tatyanna's diagnosis was Miranda. Over the months that followed we talked on the phone, exchanged emails and supported each other through what can only be called a parent's worst nightmare. We evolved from recruits, drafted by force but eager to fight, into seasoned veterans with more knowledge about "trench warfare" than either of us could have anticipated. Optimism gave way to realism and although hope prevails, neither of us is naive any longer. We know the costs, we've watched the ranks swell and mourned the losses of so many courageous kids. Kids who had to fight so hard and ultimately lost their battle. On January 17th, Miranda and her husband Neil lost their beloved Hailey to Batten Disease. She was only 7.

Although their hearts are breaking the Goranflos are committed to the fight. Their son Carter also has Battens and unless a cure is found soon, he will join his big sister long before he's ever had a chance to live. The attitude of many Batten parents is very much one of "We may lose this battle, but we will NOT lose the war" Our kids can't die in vain. A cure must be found. Please, this Valentine's consider helping in the fight. Miranda and Neil have organized a fundraising campaign. It's simple, doesn't require a huge commitment and has the potential to be very effective. For the price of a box of chocolates this Valentine's Day, you could make a difference. You could be part of a miracle. Donate $10 (or whatever) and then tell 4 people to do the same. Ask that they tell four more. And on it goes! See, I told you it was simple! For more information, please go to www.haileyandcartersdream.com. Donations can be made through the paypal link on the site.



1 comment:

Jess said...

I'm sorry for their loss... and for the battle they are still facing.