If you happen to be driving through a small town south of Boston and see a house with all the lights on, you may just be passing by our house where we are doing all we can to fight back against the darkness as the shorter days of Fall approach. There was a time when this was our favorite time of the year, now it is a time that Usher Syndrome makes the days seem even shorter than they actually are. It brings questions that are difficult to answer and heartbreaking to hear. “Daddy why do you like to work in the dark?” “Mommy why does the TV look funny?” Or comments that absolutely rip our hearts out of our chests like “Sometimes it hard for me to see, but I know where I’m going”. These are the things that Rebecca says that turn our typical family evenings into nights of worry and feelings of helplessness. We sit with her and try to explain to Rebecca that everyone’s dark is different, and that her dark happens just a little bit earlier than ours. Its a difficult discussion to have with anyone, let alone a four year old.
Fall also brings Usher Syndrome awareness month, a time when we along with a few others raise awareness about a rare disease that not only steals our loved ones hearing, but also their vision. Retinitis Pigmentosa is the underlying disease that slowly kills photo receptive cells in the retina. Like a camera’s sensor, the retina needs light to create an image but as the disease progresses the amount of light needed to create an image increases.
Across the world during September and throughout the long winter, homes of families with loved ones with Usher Syndrome shine a little brighter. This is one of the ways that we fight Usher Syndrome, we fight back against the dark but it’s a fight we know we will lose. Eventually there simply won’t be enough light, no matter how many lights we turn on.
Our only other chance to fight back is to raise awareness and funding to support research to develop a cure. I wish I could say we were close, but the reality is that there is a long way to go and we simply can’t do it alone. This year we are raising funds that will directly support research to continue work towards a cure. Today there are viable treatments for degenerative retinal diseases such as Retinitis Pigmentosa, but there are nuances with Rebecca’s type of Usher Syndrome that exponentially increase the difficulty of treating the underlying cause. All funds that we raise through our Facebook campaign this year will directly fund research to find a cure for USH 1B.
We are happy to say that we met our initial goal and with the $1,000 match that we will be contributing to the fundraiser, we will have raised over $3,000. We are grateful to our amazing friends and family who helped us to meet our goal.
We still have four days left in our campaign and you can still help us fight back against the dark. Please consider making a small donation or sharing our campaign. Donate now
With our Family’s love.