What do you wish people understood about your child?
Finley is going to trip, fall, run into things. But that is just part of her life. We want to keep her safe, but she also needs to be able to be a kid. She still needs to try things, and play with her friends.
What improved our life was knowledge. We just needed to become more knowledgeable about her condition and what we needed to do to make her successful. We dove into research about LCA, about RDH12, and kids who are vision impaired. We read book after book. We went to LCA conferences and met other families. We met other families online. We learned Braille ourselves. We are deeply involved in every aspect of her life and we show her how important it is to us.
Above all this, we stay positive and we chose to take action. We stay up to date on the latest news about LCA and what technology there is for blind children.
What advice would you give to new parents of blind children?
To look for support. Reach out to friends and tell them what is going on. Talk to your family and friends about your feelings, and when they ask you what you need - tell them.
Sometimes we just needed to vent in the beginning. We just needed to be sad. We needed people just to be there to lend an ear. Then we needed support. Support beyond what family and friends could give us. So we sought out other families of blind children. No one understands like they do. The are going through the exact same thing, and we have learned so much from them.
Mat and I have chosen two paths with Finley. One path is a path with a child who is blind. We make sure she has everything she needs to be a successful child and eventual adult with blindness. She is given encouragement and positive reinforcement about her abilities to do whatever she wants sighted or not.
The other path leads to a cure for Finley's blindness. The world of research has made great strides in therapy and cures for people who have vision impairments. There have been people with one type of LCA that have been cured.
Mat and I developed a foundation for our daughter 2 years ago called the RDH12 fund for Sight which raises money for research for RDH12 LCA. We now have 19 children and 16 families as part of our foundation and we have raised $700,000 for research. We fund research at the University of Pennsylvania and University of Michigan, and we are getting very close to a cure. We know that a cure is possible, and as long as the money is there, Finley's vision will be not be completely lost.
We firmly believe that life is 10% what happens to you and 90% what you do about it. Whatever future Finley has - whether it be blind or sighted - we will be there for her 100%.
Some parents of children with special needs chose to jump in with both feet and Jennifer and her husband Mat are among them. They are not only providing their daughter with the blindness skills she needs now, but are funding LCA research. Amazing!
Follow their story on their blog at Mixed Nuts and learn more at their other sites www.finleyfighters.com and www.rdh12.org .
You should be feeling inspired now! I know I am. A big THANK YOU to Finley and her family for sharing their story with us.
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