Join Jen's 40 for 40 challenge!
Jen Crowley is turning 40! For her birthday, she is hoping to get 40 people to donate at least $10 each to help end a vision robbing disease that runs in her family, x-linked juvenile retinoschisis. For more information, read her story in her own words below.
Thank you to everyone who participated in the Jen's 40 for 40 challenge! Jen's friends and family raised over $1100 to help cure x-linked juvenile retinoschisis! |
My name is Jen Crowley, I have been married to my very best friend, Chet, for 16 years. God has blessed us with three beautiful children, Taylor, 16, Noah, 14, and Colby 10. They are smart, kind, beautiful, strong kids and family is very important to us, and this family is pretty crazy but amazing! Noah and Colby were diagnosed with Juvenile Retinoschisis 6 years ago. After the initial punch in the gut feeling you get, we rebounded, kept faith this is what God had planned for our family, and he would bring good out of this.
I'm turning 40 in 3 days, and I've been a bit anxious and even depressed. Not because of my age but because Noah is turning 15 in 2 weeks and will start driver's ed. We have to make the dreaded visit to the eye doctor to see IF Noah will get a drivers license only be able to drive at night or not drive at all. I think it will be a win if he is eligible for day time privilege but I'm honestly not sure if even that will happen.
Noah's vision is much worse than Colby's but this kid doesn't want to show it, and he does a great job of it! He loves football, hunting, fishing, and hanging out with his buddies. He's a straight A student, quiet, humble, kind, hard working young man. He's taken his diagnosis and the limitations it has given him so well, and doesn't let it stop him do anything he puts his mind to, but this will be a huge life disappointment. |
We had a bump in the road when Colby had a hemorrhage in 1st grade, which is common for the disease. He couldn't run, jump, go to recess, have any sort of physical activity for about 3 months until the blood worked his way back in. After he took a few years off of sports and we decided no contact sports. Playing football was a dream that went away for him, but he found a new love in soccer instead.
It was rough, but we made it through and it made that little guy have so much faith at a young age, and it carries him through. He plays soccer now and is a creative, confident, witty, funny young boy. He enjoys school, even though some days are difficult, he wakes up the next day happy and ready to attack the day. He makes us laugh all the time and is a breath of fresh air. And lately I've been so worried and upset because there is little I can do with no cure, trying the eye drops many times, that have helped some patients, but not our boys. I just want to fix it for him and I can't! It makes you feel helpless and sad to the core sometimes.
So I decided to find something I can do! With my 40th birthday coming, I thought I would ask 40 people to donate at least $10 to a Retinoschisis specific research group. MOMS for Sight will make that donation for me. I would certainly like to make the $400 goal, but would be so happy to shoot for the stars. Please feel free to share with friends, family, friends of friends. I am hoping to raise money and awareness, and will remain faithful God will bring good of this and will strengthen our family during any of the storms that we may endure. Thank You so much!
a note from the founder and Executive Director of MOMS for Sight...
Jen - I completely feel every word you just wrote. For those who read my blog on this web site, they know that what you are going through, I have gone through. I hope that MOMS for Sight can help restore vision to your sons, my son and everyone's child with a vision robbing disease! MOMS for Sight is honored to welcome you to this group of determined moms who will not give up! Thank you for letting us host your challenge! |