Many, many thanks to the Maqbool Family for inviting me to guest write on this magnificent, inspiring, hope-filled blog... but most importantly for your friendship. I always say that while my family never chose this path of blindness, I am ever so grateful for the people that I have been blessed to have met as we walk this journey... a journey that is taking a turn from darkness to light :) - Kristin Smedley
As a child of a Dad that served his country in a brutal war, I was raised to respect and admire the work of US soldiers. I have always respected Memorial Day as a time to reflect on the sacrifice so many in this Home of the Brave have made that I may live in this Land of the Free. A very, very good friend of mine always tells me there are no coincidences... and now I can see that the significance of Memorial Day for my family is quite non-coincidental... and it has even greater significance than I had ever imagined.
At the beginning of Memorial Day weekend fourteen years ago, while my family and friends back in my hometown of Philadelphia were packing cars to head to "the shore" for the summer kickoff, I was in my suburban Chicago home packing up my four month old firstborn, beautiful baby boy to head to the pediatrician. Michael's eyes had been doing a weird rolling "thing" whenever I laid him down to change his diaper, and I was interested to see if the pediatrician thought the same as this first time mom: "That doesn't seem right." Agreed with me she did... but it was more than my fear that he had low muscle tone or "lazy eyes"... she was thinking brain tumor or worse, and she made all the calls to summon an emergency team that would be waiting for us after our 10 minute drive to the hospital.
My husband and I moved into Michael's little hospital room for that Memorial Day weekend where we sobbed at his bedside as he endured spinal taps, blood draws, EKG's, EEG's... the list of invasive and emotionally unbearable procedures goes on. We sang his favorite songs, rubbed his back and squeezed his tiny little hands... everything possible to ease the pain. But if you are a parent that has watched your child suffer, you know there is not much you can do to alleviate it... and that might be the worst kind of torture.
We all survived that Memorial Day weekend... and as we went home to cuddle and snuggle with our little guy that had been through so much, we had no idea that the medical staff was assembling a team to combat a major battle: cancer. All tests were inconclusive for anything other than cancer. Turns out there was one more result they were waiting on... one that would take five days for a definitive answer... and when that result arrived they were stumped: the test proved there was no cancer. They were dumbfounded.
Fast forward a few months and we learned that while we were not going to battle a brain tumor and we were not going to battle cancer.... we had a whole different, unfathomable battle: blindness. Our son was diagnosed with one of the most rare and the most severe blindness: Leber's Congenital Amaurosis (LCA). Doctors told us he'd never drive. They told us he'd never play baseball. They told us the dreams we had for our son were gone. We asked if there was something, anything, out there that might help our son. They said there was no hope for a cure... perhaps in 50 years there might be something. For now, they said, our only hope was to learn all the tools of blindness and teach them to him and to raise him well... as a blind child.
As all good troops do, we analyzed the road before us, we gathered tools to fill our arsenal of resources, and we set out to do the best job we could to protect our son and arm him with what he needed to succeed... and we prayed like hell that this would be easier than it seemed.
Now fast forward a few years, less than a decade and a second blind son later, and we got a call from our geneticist that they finally found the gene "issue" causing our boys' blindness: CRB1. Again proving the no coincidence theory, this call came just days after the genetics team at Children's Hospital of Philadelphia announced that with their approach to gene therapy they were able to treat LCA blindness in children with a different gene than my boys. Different gene, yes, but their huge success blew the gene therapy door wide open... and my husband and I started asking how CRB1, how OUR boys, could be next.
After a year or so of asking, researching, emailing, calling, visiting, and nagging the heck out of doctors, we formulated a strategy for the battle of a lifetime: Cure. This. Blindness. We connected with other CRB1 affected families and consulted with research teams and major worldwide organizations to launch the CRB1 Fund to literally fund the cure. We officially launched this mission on Memorial Day 2011. Just three years later, we have evolved to the Curing Retinal Blindness Foundation and we are are funding multiple teams working on cure options, connecting with and supporting CRB1 families worldwide, and are fundraising in preparation, in full expectation, of multiple clinical trials.
Our path of blindness has never gotten easier, but it has gotten better: When you are prepared for battle, you fight a good fight, and many times you succeed. But sometimes no matter how prepared you are, your talents, your tools, and your will to succeed are just not strong enough to win. So you retreat, you regroup, and you strategize a new plan. When the school can't meet the special needs of your child, you regroup and form a new plan that gets the needs met. When science takes a bad turn and the theory that you thought would be the one to cure your child proves wrong, you regroup and analyze a new path. When baseball as you know it doesn't work for your blind son, you find a way that he can play, successfully. All the while you remain patient enough to stay focused on connecting the problems, the challenges, with people that can gather the right troops to march to victory.
There is one tool that I believe makes a difference in whether you have the strength to regroup and fight again stronger: Hope. When you have Hope in your arsenal, you fight harder, stronger, smarter. When you have Hope you can see the result and keep your eyes on it as you strategize different paths to victory. When you have Hope, you can hear the music of a victory celebration.
This Memorial Day I am grateful for those that dedicated their lives to keep American Dreams alive. And I am ever so grateful for those that dedicate their lives to making my American Dream, my Mom Dream possible: A cure for my boys and all those living with blindness. I very much look forward to the day that I can announce the battle for a cure has been won and I can play the victory music... I wonder if it'll be on or near Memorial Day :)
NOTE: While I mention that my family was up against a "battle" of blindness, my boys, Michael (now 14) and Mitchell (10) are so comfortable in their lives that they would likely never even consider the word "battle" in regard to their blindness! They are athletes, musicians, gifted students, and have a zillion traits of "typical" boys... they are indeed typical boys that happen to be blind. Our family is, however, battling for a cure everyday: our boys have a few dreams that involve sight, and as any parent would, my husband and I, together with many other parents of CRB1 kids, are going to keep working until those options are on the table... and we will leave it to the kids to choose to take them or not :) Follow our progress at www.crb1.org and meet our family, the Smedley Family, there and at www.bikethebasin.org (While you are at www.bikethebasin.org you can read how I find the silver lining in almost all of life's challenges in my Eye Believe in Miracles BLOG.)
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