Our daughter Lucy was born with six toes on one foot.
So for a while we had 71 of them all together.
The doctor quickly reassured us that having extra digits was much more common than we knew, and that that extra toe could be removed without a fuss. But little did any of us know at the time how much that seemingly insignificant toe would change our lives. It was the first clue that eventually led to a diagnosis of “Bardet-Biedl,” (BBS) a rare genetic syndrome that would cause a myriad of health issues, most heartbreaking of which was almost certain vision loss.
To read all about her diagnosis and how it turned our world upside down, click HERE.
To read about the eventual removal of that extra toe, read HERE.
To read how that diagnosis turned our world up-right again, read the other posts on Lucy.
To read about her syndrome (BBS), click HERE.
She gives us a run for our money and her diagnosis breaks our hearts on a continual basis, but she completes our family in ways we never would have guessed were possible. Although our journey has certainly been a refiners fire, I would never trade it. It has made our children glow with compassion. It has made my husband and I so much more deliberate and aware…and thankful…for even the little things. Yes, the fact that we at one time had 71 toes has changed us for the better. How I hope that we can continue to look at the bright side and help her the best way we possibly can through the challenges that inevitably lie ahead.