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Guest Post: Hello Finley

Posted Mar 05 2013 5:21pm
It is guest blogger time again! This time we are meeting Finley. She is six and a half years old and has LCA (Lebers Congenital Amaurosis). Learn more about Finley and her go-getter parents in their story below.
Finley posing proudly with her cane.
Tell us a little bit about your family and your child:
We are a family of 5.  My husband, Mat and I have three children.  Arlington is 9 1/2, Cainan is 6 1/2, and Finley is 6 1/2.  Cainan and Finley are not twins.  We adopted Cainan when he was 14 months old, and he and Finley are 33 days apart.  We live in Massachusetts, having recently moved here a year and a half ago from Connecticut.  Before that, we lived in Florida, California, Maryland, and Florida.  We hope this is our last move!  My husband is a geneticist and I am a registered nurse.

Finley, our youngest child, was 3 years old when she was diagnosed with Lebers Congenital Amaurosis (LCA), an inherited retinal degenerative disease that leads to blindness in childhood.  We had started to notice that she was acting "different" when she was about 18 months old, but it took several doctors and specialist until we got our answer.  We were originally told that it was because she was tall for her age that she was falling and running into things.

One day she was standing at the top of our stairs in our house in Connecticut.  Her brother was still napping, and I was at the bottom of the stairs quietly motioning her to come down and not wake him up.  She couldn't see me motioning her.  This was the deciding moment for calling a specialist about her vision.  We called an eye doctor at that point, and after several specialist not being able to tell us what we were up against, we found a retinal specialist.  He sat us down and said "I don't know exactly what it is, but I can tell you she is going to go blind."

Just like that, our lives changed.  We thought she needed glasses, but we were now being told she was going to be blind.  We were directed to Boston Childrens for a retinal specialist who works strictly with young children, and she told us that she was 99% sure it was LCA.  They ran a genetic test on her, my husband and myself, and after nine long months we finally had our confirmation.  Finley had LCA and the RDH12 gene was affected.  There are 18 different types of LCA, and Finley's accounts for 4% of those types.  We were told it only affects about 85 people in the United States.

We spent a week wallowing for Finley and for ourselves, and then we decided that we were going to be okay.  I started to look into what she would need to make her an independent and successful person in life, and my husband started to research what was being done in the field for curing her blindness.

Finley was only three when she was diagnosed, but care started right away.  She was put in physical therapy to help her with balance and strength.  She was put in occupational therapy to strengthen her hands for braille and cane work.  She was put into a braille class and had instruction with a teacher for the vision impaired once a week.  She also began cane instruction once a month.

Now she is six and a half years old and in the first grade.  She goes to public school and is in a regular classroom.  She is smart, funny, and sweet.  She has a 1:1 aide that is with her all day to make sure she has everything she needs to be successful, but she works independently on her classwork.  She has braille instruction with her teacher of the vision impaired three hours a week before school and can read and write braille proficiently.  She has cane instruction one hour a week and uses her cane skillfully in public.  She no longer requires occupational therapy, but she still has physical therapy 45 minutes a week for strength.

While it still remains a full time job to keep Finley safe, she brings us so much joy.  We are so proud of her and what she is able to accomplish with her limited vision.  She has lost her central vision and her vision in her peripheral fields is 20/200 at best.  But she keeps up with her peers and doesn't let anything get in her way.
 

Name your child's five favorite things:
Art, music, reading, playing with dolls.
 
Any new milestones you want to brag about? (Big or small, they all count.)
She is learning to read.  She can still see large print, and her reading has gotten quite good this year.  And her braille has become so proficient that she is reading more and more contracted braille and reading quicker with her fingers.

What is your favorite local resource:

We live very close to Perkins School for the Blind.  They have been a great resource to us.  Finley is the only vision impaired student in our district, so we are able to meet people through Perkins.  Also, I have a friend who is in her 20's that lives in Boston who has LCA and is blind.  She is a tremendous resource to us because we can see Finley's future in her.  She gives us hope that Finley can be and will be independent as an adult. 

What is your favorite web resource:
You are going to laugh, but it is Facebook!  We have an LCA families and an LCA group on Facebook where we all talk about our kids and bounce questions off each other and give each other strength.  I have made so many wonderful friends who have vision impaired children through those groups.  Yahoo groups is also a wonderful resource.  There is an LCA resource group there as well that I belong to.   Wonderbaby.org  is my favorite blog about dealing with a child with vision impairments.


What has therapy (Early Intervention, school, or private) been like for your child?
Therapy at first was intense.  Because we were also dealing with a new diagnosis and our grief about it, we felt very overwhelmed.  Finley was unsure what to make of all of it.  But then we really saw some improvements with her strength and ability to do different things which helped us all start to enjoy it.  Now Finley loves therapy and she looks forward to seeing her physical therapist each week.  She enjoys learning new tricks with her cane and she loves learning new words through her braille instruction.

What do you wish people understood about your child?
I wish they understood that even though she is vision impaired, she can still do just about anything any other child can do.  She doesn't have to be treated like a piece of glass and that hovering over her only makes things worse.  For the most part, once people have a chance to get to know Finley, they relax and will let her be herself.   
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.
Finley and a friend. LCA buddies.
Can you think of one thing that really improved your life that you want to share with other parents? (For example: I wish we would have started melatonin much earlier! Tom never slept before, and with Melatonin, he does.)
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.


Finley
Anything else you want to say?
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.

Don't forget to support this blog with a vote in About.com's Readers Choice Awards.   VOTE!   Thanks for your support. Blindness receives such little attention in the world of special needs. This award contest is a great way to raise awareness of childhood blindness. 
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