Cone Rod Dystrophy Fund Raiser

Four years ago our oldest daughter Gracie was diagnosed with a rare eye disease, Cone Rod Dystrophy. A few months later one of our twins Mazie was diagnosed and this past December, our then 5 year old daughter, Evelyn was also diagnosed. Cone Rod Dystrophy characteristically leads to early impairment of vision. An initial loss of color vision and visual acuity (due to the loss of Cone function) is followed by nyctalopia (night blindness) and loss of peripheral visual fields (due to loss of Rod function). Patients initially lose their color vision, followed by progressive loss of peripheral vision. There are currently no proven or effective cures for Cone Rod Dystrophy. Gracie, now 10 years old, is legally blind, color blind, has loss of peripheral vision and nyctalopia. She is learning Braille 4 days a week and has mobility services twice a month. Mazie, now 8 years old is legally blind, color blind, has loss of her peripheral vision and nyctalopia. She also learns Braille 4 days a week and has mobility services twice a month. Evelyn, now 6 years old is color blind. She is going into first grade this year and will start learning Braille and will be introduced to mobility services. Unfortunately, the inherited gene causing Cone Rod Dystrophy will continue to break down the cells in their eyes that give them their central vision, color vision and peripheral vision. We are unsure of how long before each of our girls will have complete loss of their eye sight or how far this disease will go. Having our girls diagnosed with Cone Rod Dystrophy has been so very difficult. As parents you naturally want to fix the problem. No parent wants to see their kids have to struggle. With no cure for Cone Rod Dystrophy we are heart broken learning that there is/was nothing we could do. However, our girls are young, resilient and very smart. They are adjusting so well, learning fun things like Braille to help prepare them for their future. They have a loving family, an extremely supportive school & teachers and an amazing group of friends. As a family we are wanting and have been recommended to have genetics testing done on all 3 of our girls and both parents. Unfortunately health insurance won't cover genetics testing. It will be an up front out of pocket expense. Genetic testing for Cone Rod Dystrophy will help us learn how aggressive the gene is for each daughter. Helping to give us more insight on how fast the gene is breaking down the cells, telling us how long they will have their sight. It will also confirm exactly what gene is Cone Rod Dystrophy. In the future if they come out with gene replacement therapy our girls may have a chance for a cure. We will always be hopeful. These are just a few answers we will receive from genetics testing along with others. We are also hoping to get the girls a CCTV/video magnifier. These are the most sophisticated and powerful magnifying tools for the visually impaired. This device has a video camera connected to a monitor. Materials can be placed under the camera and an enlarged image of the material is displayed on the monitor. The girls would use this at home daily for reading and for homework as well as other every day tasks. They have one in their classroom at school and it helps them substantially. We also would like to get a Brailler at home (a machine the writes in Braille) as this will become their main source of reading and writing. Our family can not thank you enough for taking the time to read our story. If you are able to donate any amount we thank you. If you are not able to donate we thank you for sharing our story! -❤️The Goeller Family

Donations

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  • Judy DePrete 
    • $100 
    • 50 mos
  • Anonymous 
    • $85 
    • 51 mos
  • Desiree Spears  
    • $10 
    • 51 mos
  • Lindsay Goeller  
    • $100 
    • 51 mos
  • Pat Higginbotham 
    • $75 
    • 51 mos
See all

Organizer

Ryan Goeller 
Organizer
Sandy, UT
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