Today - I get to the part of the speech where we got the news about Finley and how we felt, and I totally lost it. That part always got me before, but it has been a year. A year! I have gotten stronger.
But what hasn't changed? Deep down I am just as sad about her diagnosis today as I was then. I am just able to put other things first - the fundraising, the getting the services she needs, and just daily life with three kids and a full time job.
But the sadness remains. I look at her, and think - "what is she going to miss the most?" Will she remember what we look like? Will she remember colors and shapes? Things in nature? What will she forget once she can't see?
I know I need to concentrate on the fact that we may find a cure and we are going to fight our hardest for that to happen. But some days......some days I just want to feel bad for her. Does that make me a terrible person? I hope not. I can't help it. I look at her and realize that it just isn't fair.
I can't find my cord, or I would put pictures on this post. So instead - I am just putting my favorite picture of Finley (as of today).
I am posting the speech. I am hopeful that people who read it will realize how much we need your love and support - but most important - we need your monetary support for research. If you have it in your heart to donate to Finley through our VisionWalk, we hope that you will make that donation. She needs your help.
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My name is Jennifer Pletcher. My husband Mathew and I have three children – Arlington who is 7, Cainan and Finley both who are 4. When Finley, our youngest by a month, was around one year old, we started to notice that she was falling more than normal when she walked, knocking into corners and tables. But we chalked that up to her being a carefree, careless lanky girl who was a little clumsy. As she got a little older, she started standing very close to the TV, or seeming to always look out of the corner of her eyes to view her picture books.
Soon family members were also noticing that something was a little off about Finley's behaviors. They would comment that she wouldn't look them directly in the eye when she talked to them. They said they noticed how close she needed to get to books when looking at them.
We took her to several doctors – starting with her pediatrician and moving on to optometrists and ophthalmologists. They were all convinced there was nothing to it. We were told that she would probably outgrow this behavior, and not to worry. Maybe in couple of years she would have to get glasses. But having two other children, we knew that something was just not right. We were not willing to accept the answers that we were being given.
Then in July 2009, we made our first visit to a pediatric ophthalmologist. After taking some pictures of Finley's retinas, he reported seeing black areas. He was not sure what it was, so he sent us to a local retinal specialist for further testing. 2 days later, we were told that Finley could have a multitude of things, but she would most definitely go blind. I was shocked. We went from thinking she needed glasses to learning she would live a life of darkness. This retinal specialist suggested we see a pediatric retinal specialist in nearby Boston. In August, 2009, our fears were confirmed by that retinal specialist. She was 99% sure that Finley had Lebers Congenital Amaurosis – a rare retinal degenerative disease. We had her blood work sent to Carver Lab in Iowa, and in May, 2010 it was confirmed that she had LCA. We even had a name of the gene affected - RDH12 – one of the rarest forms of LCA.
Soon family members were also noticing that something was a little off about Finley's behaviors. They would comment that she wouldn't look them directly in the eye when she talked to them. They said they noticed how close she needed to get to books when looking at them.
We took her to several doctors – starting with her pediatrician and moving on to optometrists and ophthalmologists. They were all convinced there was nothing to it. We were told that she would probably outgrow this behavior, and not to worry. Maybe in couple of years she would have to get glasses. But having two other children, we knew that something was just not right. We were not willing to accept the answers that we were being given.
Then in July 2009, we made our first visit to a pediatric ophthalmologist. After taking some pictures of Finley's retinas, he reported seeing black areas. He was not sure what it was, so he sent us to a local retinal specialist for further testing. 2 days later, we were told that Finley could have a multitude of things, but she would most definitely go blind. I was shocked. We went from thinking she needed glasses to learning she would live a life of darkness. This retinal specialist suggested we see a pediatric retinal specialist in nearby Boston. In August, 2009, our fears were confirmed by that retinal specialist. She was 99% sure that Finley had Lebers Congenital Amaurosis – a rare retinal degenerative disease. We had her blood work sent to Carver Lab in Iowa, and in May, 2010 it was confirmed that she had LCA. We even had a name of the gene affected - RDH12 – one of the rarest forms of LCA.
This diagnosis was hard to take. Our sweet baby with the beautiful blue eyes may have a life of darkness. It makes me want to run out and get every kid movie ever made so that she can see them all. Or take her on a trip around the world so that she can see everything now before her vision goes for sure. I can't imagine her not being able to see all the wonderful things this world has to offer.
Mat and I did not spend a lot of time wallowing in self pity though, or in pity for Finley. We knew that we had to take action. We wanted to do something that might give Finley a chance for the best life possible despite the LCA diagnosis. This meant investigating and securing all the services available for individuals who are legally blind. We got a teacher for the blind to see her twice a month, got her involved with an occupational therapist, and we began to learn Braille. But we also wanted to pursue medical options for her as well. Unfortunately there were none. There is no treatment for Finley’s type of LCA, no cure.
In fact, as we looked into it, we found that there is very little known about the mutated gene that is causing Finley's LCA. And without knowledge about what was causing Finley's LCA there could never be a treatment, nor would there be for any other little boy or girl with LCA that comes after Finley. The only way for that to change is for serious, significant research to be devoted to this field. So we talked to other LCA parents, searched the internet, and looked for organizations that supported research for diseases of the retina that we could in turn support. That is when we found the Foundation Fighting Blindness (or FFB) and their VisionWalk in an area near our home – Boston Mass. FFB supports research and research for a cure is our main goal. We know that research is the only hope Finley has. By bringing any money that we can provide together with money from other like-minded people in an organization like FBB, we ensure it gets into the hands of most competent researchers in quantities sufficient to possibly make a dent in finding a treatment of this disease.
And money is the key. The more that is provided for research, the better our understanding, the better the chances of finding something that can help. We of course would never be able to provide enough money on our own to make a difference. So that means fundraising. After we did some looking around at the Foundation Fighting Blindness website and read about VisionWalk, we knew we needed to participate. Within 1 month of the walk last year, we had notified most of our family and friends of our intentions to walk on behalf of Finley and donate to the research that FFB promotes. And in that one month we were able to raise $5000 for FFB.
We called our team the Finley's Fighters after our little girl. We had such a wonderful time being able to do something positive for Finley. We know we have a fight on our hands for a cure. Being able to do a VisionWalk through FFB, knowing that money will help fund research to find a cure, was very important to us. We will do anything to cure Finley of LCA.
Once our first Visionwalk was over last October, we knew we wanted to walk again and hopefully double our fundraising goal. Early this year we made the decision to walk in the Pittsburgh Visionwalk and give our friends and family a chance to walk with us.
We maintain a family blog that we started a few years ago. It has provided a great way to communicate with friends and family and just generally spread the word about what is going on with Finley. The blog also serves as my first source to get the information out about our fundraising efforts. I did a blog post about Finley and about FFB and linked it to my Visionwalk page. Within a day or two, I had already gotten some donations, and before I knew it, we had $1500 in donations before we even officially started to fundraise.
Then Mat and I and our parents reached out to family and friends. This past July we held our first annual Finley's Fighters BBQ and invited anyone who wanted to come. We made a simple flier on the computer, and handed it out to people we knew, posted it in the post office and banks around town – anywhere it got visibility. My mom took it to work with her. We spread the information by word of mouth. Then our friends and family spread the word. We had the local newspaper run an article about Finley and it included information about our BBQ fundraiser.
We had over 100 people show up that day. The BBQ was not hard to put together – with volunteers of friends and family, we were able to quickly pull it together. I set up the Perkin's Brailler and brailled bookmarks for anyone who wanted one. We had someone to check everyone in and collect donations. We sold our T-shirts. We had a family member do free face painting and balloon animals. I gave away free magnets with the Finley's Fighters Logo. It wasn't much effort, but it brought amazing results.
Besides the people that came and supported us at the BBQ, we received dozens of letters and money in the mail from people who could not attend but wanted to show their support. We heard from people from far away who had read our article and wanted to help. All in all – that BBQ made $5000. We were blown away. To date, our Finley's Fighters team has raised $8000 just this year for FFB on Finley's behalf. And we are not done yet.
This year, we attended the national LCA conference in Philadelphia. After listening to countless researchers thank FFB for their monetary support for their research, it was confirmed in our minds, that FFB was the right organization for us. We saw these researchers present their results on gene therapy and new drug therapies, how already these efforts are restoring vision to others with LCA, and how the money that is being raised for FFB is making a difference. We talked with several other families who feel the same way we do about the importance of research. We told them about our efforts with FFB. We talked with the researchers who wouldn't have found the cure of one type of LCA if it wasn't for money from FFB and from the families who fundraise for them. This conference and the researchers we met fueled our fire to push forward with fundraising efforts for our daughter.
And money is the key. The more that is provided for research, the better our understanding, the better the chances of finding something that can help. We of course would never be able to provide enough money on our own to make a difference. So that means fundraising. After we did some looking around at the Foundation Fighting Blindness website and read about VisionWalk, we knew we needed to participate. Within 1 month of the walk last year, we had notified most of our family and friends of our intentions to walk on behalf of Finley and donate to the research that FFB promotes. And in that one month we were able to raise $5000 for FFB.
We called our team the Finley's Fighters after our little girl. We had such a wonderful time being able to do something positive for Finley. We know we have a fight on our hands for a cure. Being able to do a VisionWalk through FFB, knowing that money will help fund research to find a cure, was very important to us. We will do anything to cure Finley of LCA.
Once our first Visionwalk was over last October, we knew we wanted to walk again and hopefully double our fundraising goal. Early this year we made the decision to walk in the Pittsburgh Visionwalk and give our friends and family a chance to walk with us.
We maintain a family blog that we started a few years ago. It has provided a great way to communicate with friends and family and just generally spread the word about what is going on with Finley. The blog also serves as my first source to get the information out about our fundraising efforts. I did a blog post about Finley and about FFB and linked it to my Visionwalk page. Within a day or two, I had already gotten some donations, and before I knew it, we had $1500 in donations before we even officially started to fundraise.
Then Mat and I and our parents reached out to family and friends. This past July we held our first annual Finley's Fighters BBQ and invited anyone who wanted to come. We made a simple flier on the computer, and handed it out to people we knew, posted it in the post office and banks around town – anywhere it got visibility. My mom took it to work with her. We spread the information by word of mouth. Then our friends and family spread the word. We had the local newspaper run an article about Finley and it included information about our BBQ fundraiser.
We had over 100 people show up that day. The BBQ was not hard to put together – with volunteers of friends and family, we were able to quickly pull it together. I set up the Perkin's Brailler and brailled bookmarks for anyone who wanted one. We had someone to check everyone in and collect donations. We sold our T-shirts. We had a family member do free face painting and balloon animals. I gave away free magnets with the Finley's Fighters Logo. It wasn't much effort, but it brought amazing results.
Besides the people that came and supported us at the BBQ, we received dozens of letters and money in the mail from people who could not attend but wanted to show their support. We heard from people from far away who had read our article and wanted to help. All in all – that BBQ made $5000. We were blown away. To date, our Finley's Fighters team has raised $8000 just this year for FFB on Finley's behalf. And we are not done yet.
This year, we attended the national LCA conference in Philadelphia. After listening to countless researchers thank FFB for their monetary support for their research, it was confirmed in our minds, that FFB was the right organization for us. We saw these researchers present their results on gene therapy and new drug therapies, how already these efforts are restoring vision to others with LCA, and how the money that is being raised for FFB is making a difference. We talked with several other families who feel the same way we do about the importance of research. We told them about our efforts with FFB. We talked with the researchers who wouldn't have found the cure of one type of LCA if it wasn't for money from FFB and from the families who fundraise for them. This conference and the researchers we met fueled our fire to push forward with fundraising efforts for our daughter.
Our family will never be the same. But Finley's diagnosis has changed us for the better. Would we have wanted this for her? No. But can some good come from it? Of course. The more we spread the word about LCA, the work of FFB, and the abilities of research to save someone's sight, the better Finley's chances are of always being a sighted person.
Life is 10% what happens to you, and 90% how you react to it. For us the 10% was the day we received the news that Finley would go blind without a cure. The 90% for our family is everything that has followed that day, and will continue until her LCA is cured. We will never give up. We will always fight for a cure. And with the help of FFB and their Visionwalk, we know that a cure will happen in her lifetime.
We are thankful for FFB. We are thankful that even thought Finley's LCA is rare, that there is hope because of organizations like this. We hope that after hearing our story, you will also feel the drive to make a cure a reality for our little girl and all the people out there who have retinal diseases.
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