I’m Brent, a 22-year-old linguist from North Carolina. I was born with congenial (childhood) glaucoma and microphthalmia, which means that I had underdeveloped eyes. I lost sight in my left eye at age 3 after many surgeries, and my right eye was diagnosed with glaucoma at age 5.
Glaucoma is a lifelong condition. We seek to safeguard the health of the optic nerve, which is threatened by elevated intraocular pressure. Glaucoma treatments involve medications focused on increasing the outflow or decreasing the amount of aqueous fluid produced. Surgeries also center on providing additional outflow methods (shunt surgeries), or decreasing production (laser surgeries).
If you have a child with glaucoma, I want you to know that they should nurture their gifts and interests! Growing up, I’ve participated on the school swim team, in school plays, done volunteering and pursued various other interests. Since then, I continued to study Spanish Linguistics and Literature, and now I’m finishing my Masters Degree in Linguistics, with a focus on second-language acquisition and instruction. This fall, I’m deeply grateful for the opportunity to teach in Spain as an English-language assistant.
When I was born, a doctor told my parents that they were raising a child, not an eye. Children with glaucoma can live full lives. Childhood glaucoma is serious; children with glaucoma often have reduced sight, be it in acuity and/or periphery, limited night vision, and have to pursue treatment in order to maintain the healthiest vision possible throughout life. They may have to approach activities differently, for example, they use accommodations in P.E., need a flashlight to get around backstage in a play, or may have to figure out other ways to compensate for peripheral vision during a backstroke, but these obstacles can be accommodated. Of course, one large part of providing children with glaucoma the best opportunities to pursue their vocations is medical care for the best vision possible.
In my case, the Icare tonometer has allowed my family and I more detailed medical information, allowing us to monitor pressure spikes and drops after surgeries (in the right eye, the Baerveldt shunt and photocytocoagulation surgery). We also have more diurnal information about trends throughout the day for medication purposes. By facilitating access to the Icare tonometer, Saving Kids' Sight is helping other families and doctors gather the most information for clinical decisions, as doctors continue to research medications that can potentially protect the optic nerve, increase pressure outflow, and decrease the production of aqueous humor.
If you are raising a child with glaucoma, I want you to know that you are *not* alone. It is my hope that these resources and community may be of use to you.
Splish! Splash! 52 people, representing 15 families, played, chatted, and splashed their way around both pools at Rainier Beach Pool last weekend.
Fearless swimmers dove or jumped off the high dive board into the deep end. Others swam laps, or played Marco Polo. Thrill seekers zoomed down the water slide. Younger kids splashed in the beach zone, had fun with noodles, and played in the currents of the lazy river. There was also ample opportunity to take a break and relax in the hot tub with friends.
Each child with a visual impairment went home with a heart-shaped box of delicious Godiva chocolates, donated by a neighbor who had a surplus of chocolates from a corporate event.
A big thank you to Seattle Parks and Recreation for helping us to host this event.
We huddled in the "Party room" at the back of the Paint Away! studio in Redmond last weekend. One table of artists painted a ceramic piece of their choice, and the other group cut and arranged colored glass pieces to create a nightlight. Parents and kids chatted and ate snacks as they worked. The creations all looked superb at the end.
Thanks to everyone who generously supported our fundraising drive to buy more Icares for the Icare lending library at Duke Eye Center! We just received an email from Dr. Sharon Freedman:
I am happy to report that three boxes of Icare units have arrived and are sitting in my desk, waiting to be opened and put into use with the lending library!
Special thanks to Mr. John Floyd, the General Manager of Icare USA, and Dr. Sharon Freedman, for making the lending library a succes, and for helping so many other families to control their kid's glaucoma.
For this year's Winter Break, I was fortunate to go to Park City, and have daily lessons with the National Ability Center. I’m terrified of skiing down a steep slope, and as a beginner, all slopes seemed steep to me. The first day, I stayed on the magic carpet for most of class, and the slow pace felt good. The 2nd day, I was on the beginner chair, and then a more advanced chair. I went on a short blue run, and was not sure I could do it. I kept pushing forward. On the 3rd day, my instructor Eric said his mission was to get me to trust my equipment over the next few days, and to stop being afraid. No fear allowed!
Our Valentine's Party last weekend was lots of fun! We had fun decorating cookies and making Valentine’s cards, and several other arts and crafts projects. I also taught some of the kids how to make duct tape roses and origami hearts. It was awesome to see the people who came get to know one another.
Thanks to your support of Saving Kids’ Sight, thirteen new Icare tonometers were loaned out to families this year, to help prevent glaucoma from stealing their child’s sight. Measuring their child’s eye pressure three times a day and reporting back to Dr. Sharon Freedman at Duke Eye Center, not only helps to manage their child’s advanced glaucoma, but is also helping hundreds of ophthalmologists around the world to better understand and treat childhood glaucoma.
Please consider a gift to support our goals for 2017. We have a generous donor who will match all donations from now through December 31st up to a total of $10,000. Donations can be made through our Fiscal Sponsor, Residence Partners NFP, by clicking the DONATE! button above.
In 2017, with your support, we can help more children who are battling glaucoma. We currently have the opportunity to purchase refurbished units at half price ($1,995 instead of $3,995). Please help us to purchase 12 more Icares for beating childhood glaucoma in 2017.
Thanks so much for your generous support,
Dr. Sharon Freedman, shows Karen Crozier how to use a tonometer with her son Quinn Crozier at the Duke Eye Center. Sarah Smale raised money to buy a library of tonometers. The instruments, which are used to check glaucoma pressures, will be loaned out to other patients to bring home.
Shawn Rocco/Duke Health
The goal of my blog is to increase awareness of childhood glaucoma and other eye diseases, and to unite kids like me living with visual impairment.