I’m a day late, but got THE best, most optimistic news TODAY, Tuesday, so here it goes.
I am lucky that when I got married, I truly gained a wonderful new family. Over the course of my going-on-14-year-relationship with my husband, I have been most lucky to have formed a true sisterhood with my sister-in-law, Jennifer. She’s the first person I call if I need help, a venting partner, or a cheerleader.
She is the mom of three crazy kids, all of whom I love as if they were my own babies. But, one of her babies – Finley – has Lebers Congenital Amorosis (LCA), specifically, RDH12. There’s a whole lot of complicated science terms when it comes to this RARE diagnosis (less than 100 people in the country have it), but the gist of it is that Finley’s eye sight is deteriorating, especially her central vision. We are racing against time to raise money for research because Finley’s blindness cannot be reversed (YET!); our hope now is that we can stop any further deterioration so that she can continue to have some, though not great, vision (until science catches up and reverses RDH12 and LCA for good!).
Finley’s diagnosis is obviously not a cause for optimism in our family. Personally, I think that something so rare and sucky has no business in my family. But, what DOES make me optimistic is how everyone around Finley has handled her diagnosis. Through her foundation, we’ve raised close to a million dollars. For real. The entire town of Connellsville, PA (and soon, Littleton, MA!) has adopted Finley’s cause, coming together for events and fundraisers like crazy. It’s amazing. Though, with a poster child this strikingly cute, I’m not sure how you could say no
But the most optimism-inspiring thing is that we found out this week that research is really moving along, all because of support from generous people. The cure researchers have developed and are testing on mice is WORKING! It’s stopping degeneration!!! There are a few more hoops before the cure will get FDA approval, all of which will cost even more money. But, my goodness! Our girl WILL see, see, see!
Ain’t science (and kindness and goodness in people) grand???
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