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So, this is a few weeks late, but we recently had Ethan’s bi-annual visit to the specialist at The Cleveland Clinic. This was the first appointment that I was worried about, the first time that as we walked into the clinic my heart was filled with worry. They said that he wouldn’t notice any changes likely until he is around 10 years old, but we are almost half way there folks. For the longest time we have been able to live with RP in the back of our minds. It has just been something we will have to deal with eventually. Eventually is getting too close for this mommas’ comfort. I never knew how difficult it would be as a parent to deal with heartbreak (or potential) of your child. I don’t think a single thing in the world hurts more than the thought (or the actual event) of your child’s soul hurting. I know that there are worse things in the world but somehow that doesn’t lessen the hurt of this. No one wants to lose their sight. It’s a vital part of our living. Think of how many things in your life are affected by your sight. Everything, I mean everything. Think about how you feel when you see a beautiful sunrise, or the face of a loved one smiling back at you. Think of how you communicate with your eyes, how your memories are affected by your ability to see. The gift of sight enriches your life.
We were blessed by the good Lord above by hearing that he is not noticing any changes in his vision/eyes yet. We also discovered that there is currently a human clinical trial going on to treat Ethan’s specific gene mutation. This is HUGE news!! This is the news that we have been waiting for. If all goes well with the clinical trials, we could be looking at a treatment/cure for Ethan in the next 5-10 years. It gives me goosebumps just thinking about it. THIS, THIS is why we do what we do. This is why we work so hard to raise money, this is why we work so hard to raise awareness. We want our son to have the gift of his sight. The news hit me in a lot of different ways. I felt a host of emotions. I was happy of course, to think that there might actually be something we can do to help our son! But I was also scared and cautious and almost angry. Angry to think that this could be just a tease. That maybe the treatment won’t work in humans or maybe it won’t be safe or will cause some other side effects. Angry that insurance probably won’t pay for it and we won’t have the money to afford it. All we can do is continue to pray. Praying and my family are literally the only things that are getting me through the days of worry and fear. Please continue to pray for our family and our Ethan and continue to support us in any way that you can!
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Another walk is upon us. This has been a tiring year, as we just had our second child!! A little girl, Sophia Grace. Lucky for her, she will never have to know the sadness of having to lose her vision. She will; however, learn some day that she could also be a carrier of this awful disease and that she too could have a son with RP. That will not be an easy thing to tell her. Ethan LOVES his baby sister, and Jason and I are really hoping that his love for her, and her love for him, will help him through this process. He will have another visit to the specialist at the Cleveland Clinic in September, just before the walk. We are trying to make it an adventure by scheduling it around a camping trip in the area. We want to make all of Ethan's experiences with RP as positive as possible. We know that we are fast approaching the day when Ethan will ask us why we attend the vision walk and what Team Ethan really means. That day will be so hard. How do you tell a young boy that he will someday lose his vision? What does that conversation even look like? What details do you share? What do you leave out for the sake of not scaring him? These are the reasons that I am so thankful for the community that I have found on Facebook Social media isn't exactly my cup of tea, it broods a lot of unnecessary drama; but, it has led me to a lot of other people who have RP and/or know someone who does and those connections have allowed me to get some real answers to some of the hardest questions.
Signing off.... tired momma! PS: If you want to become a part of Team Ethan or simply donate, please visit our page marked shirts/donation, or join the fight and be a part of the cure! Some days it's really hard to think that Ethan will some day lose his vision. Right now he is so "normal", he's happy, healthy, outgoing, fun, loving... how is it that could possibly change? Now I know that losing your vision is small potatoes compared to many of the things that many other children/people deal with; and yet, it's not altogether small. No one wants to lose their ability to see. I have been reading about some of the clinical trials that are happening right now and it warms my hear to know that there are several that are focusing solely on treating/curing the type of Retinitis Pigmentosa that my son has. There are so many forms, but Ethan's is the most common and the most severe. The trials are only in their first phase but there is so much hope there!! What if they could actually come up with a treatment/cure for this in Ethan's lifetime? How surreal would that be?! How amazing would that be?! So we keep fighting! We keep raising money, we keep raising awareness, and we keep trying to raise a boy who will conquer this world, vision or not. And we keep holding onto the fact that despite the fact that he may lose his vision, at least he has had the opportunity to see! He will have the images he has collected over his lifetime in his memory forever. What a gift!!
http://www.blindness.org/blog/index.php/meiragtx-treats-first-patient-in-xlrp-gene-therapy-trial/ www.ndcn.ox.ac.uk/research/clinical-ophthalmology-research-group/trials/xlrp-gene-therapy Check out these articles on some recent advances! (2017) We just finished another successful vision walk! Twenty-Five amazing people joined our team this year to walk in Ethan's honor! We raised a total of $1,521.00, a little less than last year but still a good bit! We are thankful for every penny that we receive! Some of you may be unaware but there is currently a treatment for both a form of Retinitis Pigmentosa and a disease called LCA. It is because of these donations that these treatments are available! Our family is hoping that one day, with the help of all of the money raised at these walks that we will have a treatment or a cure for Ethan.
As always, we thoroughly enjoyed having everyone at the walk and had a blast at the after party we hosted! YOU are the reason that we are able to get through this crazy thing called life, you help lift us up when we are down and give us all of the support we need! Whether or not they ever find a cure for Ethan's RP, we know this one thing for sure, he will be surrounded by people who love him fiercely and that is all he needs! I see a lot of people visiting our website and that is amazing! One of our main goals for this website was to increase awareness and encourage people to learn more about visual impairment and how it impacts those around us. Please feel free to drop a comment below one of my blogs or send me an e-mail through the "contact" tab. We love to hear from you! Also, if you aren't aware... baby Weaver #2 is going to be a girl!! Although we would have been perfectly happy with a boy, it is nice to know that we don't have to worry about her having RP. Ethan is very excited to become a big brother and he will no doubt rock it! :-) Another year has passed by without any changes to Ethan's vision. Thank the good Lord above! He is spending his time being a typical crazy three year old. :-) A few weeks ago we attended the Vision Walk kick off dinner and as usual it was nothing short of amazing! A young lady who has LCA, which is another form of a retinal disease which causes blindness, talked about how she had received gene therapy treatment and is now able to see things she never even imagined were possible! She can now see snow flakes, rain drops, and the stars! Imagine for a second that you couldn't see those things. They seem like something so small and simple, but what joy you get from seeing them! Haven't you ever sat inside on a snowy winter day and enjoyed watching the snow fall? It's these tiny things that we, as sighted folks, take for granted. She received a gene therapy treatment (which was no doubt in part funded by the Foundation Fighting Blindness) that saved and restored her vision! This is our dream for Ethan. This is why we do what we do. This is why we participate in this Vision Walk every year, and raise money selling T-shirts. We are very excited for the walk this year and hope to see as many, if not more, of our friends and family coming out to support us! Your support means so much. It means that we are not in this alone.
As some of you may or may not know, we are currently pregnant with baby #2. As you can maybe imagine, this is another journey which will test our faith. We don't know what we are having yet. I wouldn't mind having another boy, but if we do, the fear will always be in the back of my mind (until we can get him tested), will he have the gene as well? This is something very personal that I struggle with, as I am the carrier of the gene and so consequently if my child has it, it's because I have given it to him. I believe that God works in mysterious ways and that he has a very specific purpose for Ethan and any other child of mine who might inherit this gene from me. But as a mother, who wants to protect her children, it still stings a little. Either way, we hope for nothing less than just a healthy pregnancy and a healthy baby, with or without the gene. A girl would be nice though. ;-) One of the most difficult things about Ethan's diagnosis for me is knowing that there is nothing that I can do to change it. I can't cure it, I can't even make it a little better; and as a parent, that is really challenging to accept.
Recently, I have been doing some soul searching and trying to find more ways that I can be involved with the Foundation Fighting Blindness. Not just in raising money for the important research that they do but also raising awareness. Raising awareness of this amazing foundation and all that they do for the visually impaired community. Also, raising awareness of the visually impaired community. I did a project in college where I went out into the community and acted as a blind individual. I wore dark sunglasses and kept my eyes closed. My sister accompanied me on this trip. We went to the grocery store and to McDonald's. Something that really surprised me was how unaware people are. I was shoved, bumped into, and had the door slammed in my face. No one seemed to notice that I was "visually impaired" and if they did, they didn't seem to care. When we visited McDonald's, the cashier noticed that I was "blind" and something very interesting transpired, he talked to my sister the entire time!! He never said one word to me, and he was even asking questions about me like "is she going to get a guide dog?". It was a surprising to me that just because I couldn't see, he automatically assumed I couldn't speak for myself. I think that this opens up an important perspective, something to really think about. It gave me some insight into what blind/visually impaired (and other disabled individuals) deal with on a daily basis. We need to be more aware of those around us, and aware of the way that we are treating people. I've been making phone calls for our local Cincinnati Vision Walk trying to gather support for the walk. Once again, people never cease to amaze me in their lack of interest in helping others. I have been pushed aside, lied to, and hung up on! I took a break from it for a week or so because I was really starting to lose heart. I prayed about it, and I returned to it this week. The response I received this week was slightly overwhelming! The first person I called actually gave me the time of day, they listened to what I had to offer and then they agreed to make a charitable donation. It reminded me why we are doing this.... We are doing this for our son. We are doing this because there is simply nothing else we can do for him. THIS, is how we FIGHT. We make people aware that every person matters, sighted or not, hearing or not, physically able or not. We raise money to support research that might some day save our sons vision! We grow one heck of a support system for our son and our family to get us through this messy life. We give our son a vision, because we can't give him his sight. Please hear me when I say, we must be kind to everyone. We must be willing to listen, even if we don't have time. You taking the time to listen to someone's story may be just what they need to get them through the next day or the next week. "Be devoted to one another in love. Honor one another above yourselves." Romans 12:9-10 Facebook is not my favorite internet pastime; however, it has opened up a lot of opportunities for us to become connected with other people/organizations that can help us navigate these waters. Something very interesting that I came across most recently was this travel company called TravelEyes. It is a company that organizes trips around the world for sighted and blind travelers. The travelers are paired together with someone different each day on their trip. It was founded by Amar Latif, a blind man whose dream was to travel the world. He created this company so that blind people would realize that where there is a will, there is a way.
I encourage you to visit his Facebook page and see the great work that he is doing for blind AND sighted individuals! https://m.facebook.com/TraveleyesLtd/ We will definitely keep this on our radar, as this could help Ethan enjoy travel as he gets older and his vision declines. As I sit here this evening, looking at our website and reeling it all in; I think about how unreal it all feels. It has been almost 3 years since we received the news about the RP, and yet, it still feels like it can't be true. It can't be true that Ethan will lose his vision one day. He is too silly, too smart, too funny, too lovable, too outgoing... you just never think that something like this will happen to you or to your family.
On the other hand, I am friends with a lot of very inspiring people on Facebook! Facebook may have it's downfalls, but it offers our family a way of connecting with people from all over the world that have Retinitis Pigmentosa, or other blinding diseases. It gives us a sense of encouragement to see people with low or no vision doing amazing things such as hiking, climbing mountains, and running in marathons! These people aren't letting their loss of vision hold them back. I can only hope that we can instill these same values in Ethan so that he too can accomplish the unthinkable! We have to continue to lean on God and know that what Ethan may lack, He will provide. Ethan will always have just what he needs, and that is very comforting to me. We are going to be taking lots of family trips this Summer and Fall, as we have just updated our camper! We'll be sure to post lots of pictures!! I am so glad that you have decided to visit our web page! My husband and I were devastated when we learned about Ethan's diagnosis. We have come a long way in the last 3 years and have decided that we aren't going to let this beat us down. Building this web site is an important way for us to be able to share our story with others and gain awareness around the globe about retinal diseases. The Foundation Fighting Blindness, which we work closely with, is so close to a cure!! There is even currently a gene therapy being used to help improve and/or prevent vision loss in patients with a disease very similar to Ethan's. We hope that through our endeavors we will be able to raise enough awareness to help fund the research that will someday save Ethan's vision too!
Please feel free to look around and contact me with any questions you may have. We are very open about Ethan's diagnosis! |
AuthorI am the proud mommy of Ethan! My husband Jason and I decided to start up this web page as a way to stay connected with our friends and families and share our story! Archives
September 2019
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