The following story is a guest post from Debra Dollar, a young woman in the United States who was diagnosed with Optic Nerve Hypoplasia. She is currently raising funds for adult stem cell therapy. Please read and share her story.
Family Fundraising Stem Cell Treatment for Optic Nerve Hypoplasia patient
Hello everyone! My name is Debra Dollar. I’m 24 years old, I live in the U.S., in the state of Arkansas, and I’m a legally blind visual artist/hobbyist. I currently live with my Mother, step-Father, youngest biological sister, youngest step-sister, dog, rabbit, and two large fish. My Mother is an Arkansas and Texas licensed Emergency Medical Technician (currently a substitute teacher), and my step-Father is retired Air Force (currently a CCA for the Postal Service). I happen to have a proud High School Diploma from the Arkansas School for the Blind and Visually Impaired. These days however, I spend most of my time getting to know my way around the things I love most. I like learning about computers and how all the little components work together to form one great machine. I also draw free pictures for people, as it is good practice for me. Honestly, I think that if I had the confidence, I’d go to school for digital art or IT work. Unfortunately, because of my visual impairment, I can’t help but feel restrained in these career types, and here’s why.
At six months old, I was diagnosed with Optic Nerve Hypoplasia. Optic nerves are a pair of small nerves that sit behind each eyeball and relay visual messages to the brain from the eyes. The Hypoplasia part is the underdevelopment of one or both nerves. This happens during pregnancy, and when I was still in the cooker, my optic nerves only grew to be a third of the average size they should have been. I also have Nystagmus and Strabismus, which I believe are common in most people with ONH. Nystagmus is the jumping of the eyeball as it forms an image in the brain. Unfortunately, this jumping makes it hard to focus on anything, thus making it even harder to see. Strabismus, or commonly known as Crossed Eyes, is an inability to align both eyes correctly, causing one or both eyes to roll off to the side. From what I’ve read, this causes issues with depth perception, and depth is something I’ve definitely never been able to understand. Both of my eyes have different amounts of vision. My right eye is 20/400 and my left eye is something much worse. I don’t know the exact numbers on it, but it’s bad. My left eye is the one eye that screams Strabismus. It rolls off in many different directions, and for some reason, when I can get it to look straight ahead, I can’t see anything in front of me. What I can see in my left eye, can only be described as light perception.
This combination of conditions do cause a great deal of challenges in my life. One being that I can’t drive and where I live, there isn’t any public transportation. So, I usually just have my Mom or sisters take me where I need to go. This means that my schedule always has to work around someone else’s, and that stinks sometimes. I want to be able to get up and go take myself to the doctor or the store without having to drag someone along with me. Another challenge would be cooking and cleaning. I’m already terrified of fire as it is. Throw in some bad vision, and you’ve got one rather large chicken. Most of my fear still comes from the stove. At 24 years old, I’m just now starting to get used to the oven, but one thing that makes cooking and cleaning so hard is not being able to read buttons or instructions on containers. I can’t tell if anything is done cooking or is burnt, and I really don’t want to shove my face or hands into a hot frying pan, just to see what’s going on. I’ve broken several vacuum cleaners because I couldn’t see the small metal object on the ground, I can’t ever seem to clean up any mess completely, and I have a really bad habit of using the wrong cleaners the wrong way. I don’t like bulky visual aids, dots, braille labels, talking machines, or large print anything. I don’t like having them all over the house, I don’t like using them, and I just don’t like dealing with them at all. So I have to use my phone to read anything, and having to rely on your phone gets pretty old, fast. Unfortunately, it’s all I’m left with and I guess it is okay. However, it doesn’t solve every low vision issue.
I am responsible for taking care of a little bunny rabbit named Cinnamon Buns. I have to feed her, I have to clean her cage, I have to bring her in and out of the house if it gets too cold or hot outside, I have to make sure she’s healthy, I have to take her to the vet. I’m responsible. I love this rabbit to the moon and back, and not being able to see for myself if she’s sick or has bugs or something in her cage, terrifies and frustrates me to no end. I always have to rely on having someone there to look at her for me, take her to the vet with me, and make sure there’s nothing harmful in her cage like bugs or if she has access to cleaning chemicals. It really frustrates me that I can’t take care of my bunny on my own. I don’t even want to think about having children one day. Unless my vision is greatly improved, I’ve already decided I’ll never have kids. I know that there are completely blind couples out there who have raised children, but I know that I would not be able to do that. I just know myself, you know?
School has always been a challenge. Where do I start? Being blind made me stand out like a sore thumb in school. I had to walk around with a cane, a huge suitcase on wheels, I had to have large pieces of machinery in every classroom, and I could hardly participate in class because I had to be in another room to do my work. My books were all in braille and had multiple volumes that I had to keep up with. I couldn’t just take a worksheet and have it done that day, it had to be enlarged or digitized so I could see it. Braillers or talking machines made it hard for my classmates to concentrate. I could go on. I hated having to use so much junk just to do my work. I hated that kids treated me differently. I found it very hard to make friends. I even tried to go to college for a year and a half; I had had it with that life. I can’t see the board on my own, can’t do my work on my own, couldn’t get there on my own, classmates acted differently towards me… I was done.
And finally, the one challenge that gets to me on an hourly basis, every day, is art. I have been practicing how to draw since before I can remember. It is truly my greatest passion and I cannot give up on it, no matter how much I wish I could. My vision keeps me from wanting to draw on paper anymore. I always end up coloring outside the lines, leaving huge white places all over the picture, using the wrong color, and I could go on. And what’s funny, is that I don’t ever notice these things until after I’m done and look at it with my phone. I can’t see good enough to add important details to traditional works, unless the canvas is massive. I can’t use my phone to draw, either. It just gets in the way, more than it helps. Because of all this, I really only draw digitally, now. On the computer, I can zoom in as much as I need to, colors and lines are so much more solid and smooth, mistakes are easily fixed, and the overall image is just so much better. But the one thing that bothers me the most about drawing is that I’ve finally reached my limit on what I can see and how I can put that onto paper. My pictures will probably never be realistic because I can’t see texture, lighting is out of the question, and small details are impossible, because I simply cannot see them. This creates a massive barrier between me and my success in the digital art industry. If I cannot draw texture, lighting and detail, but this guy sitting next to me who can see, can, he will get my dream job because he can see things that I can’t. I can practice drawing, every minute of every day, but if I can’t see it, how could I possibly draw it? This is where I wish I could just give up and go pick up a musical instrument, but I can’t. For some awful reason, I can’t stop drawing. It’s a habit, it’s a passion, and it’s all I feel I’m good at. I can’t let my horrible vision get in the way, I’m too motivated to get better, and that is so frustrating!
So I have to tell you all about one average visit to my grandparents’ house. That morning, I woke up to my mother sitting next to me, stroking my hair, with what I think were tears on her face. I asked her what was wrong, and she couldn’t answer. Finally I followed her into the kitchen, where my aunt, over the phone, proceeded to tell me about a girl in Colorado, about my age, who had ONH like me, and could practically see, now… Yeah! Her vision had gotten way better! She was even able to drive after the adult stem cell treatment! Honestly, I don’t remember my reaction, but right then, I was determined to do whatever she had done to be able to see. Six years later, I’m still trying! Throughout those years, I’ve come to learn about Beike Biotechnology and their adult stem cell research and treatments. From what I understand, their adult stem cells to help my Optic Nerves grow and develop which will improve my vision. This company provided the stem cell technology for the girl on Colorado and many other ONH patients who have seen pretty amazing results. It’s very possible that my vision won’t be cured 100% on the first try, but I can promise you that any little bit helps in such a huge way. It’s hard to describe to sighted individuals, just how helpful and liberating a little bit of sight can be. For me, just to be able to open a normal sized book and read it with my own eyes would make me feel like I could fly. I do want to make it clear however, that Beike does not use embryonic stem cells. There are no abortions involved in any way, shape, or form, in these treatments. I am told that they use stem cells from umbilical cords, which means that there is no harm done to anyone. Umbilical cords are usually thrown away, anyway. It’s good that they can help save or simply improve so many lives!
I have prayed so hard for something like this, my entire life. I didn’t think I’d ever be able to see, and now there’s a huge possibility waiting for me in Thailand. Finally! I may actually get to see my family’s faces, be more active in everything with so much confidence, draw like a skilled sighted person, cook with less fear, and take care of my rabbit on my own, ride a bike anywhere I want and know I’m not about to crash. There’s a possibility I could truly take on the world and feel like I’m really living the life I’ve always wanted. I know I’m not a sweet little girl, or a student, or a college grad with an awesome job. I realize that I could be suffering from something much worse, but what I have is a blessing and a curse, all in one. I love that there are things I know, that my parents don’t know, just from being blind. That’s kind of cool in a way. But I’m ready to take flight. I’m ready to see the world in all its glory. I’m ready to stop being so scared. I’m ready to be confident. I understand that I could be these things right now, but I’m just not. I know people who are happy with not being able to see and I think that’s wonderful, but I’m not. I have a chance to obtain the one thing I’ve been dreaming of my entire life. Too many sleepless nights, praying, hoping, dreaming, crying, begging… just to be able to see. It’s all I really want for myself. Then, I know I could do so much for others.
My Step-Dad has created for me a donation page, on a website called GoFundMe. There, we are asking for any help we can get. Sight’s price tag has a bit of a sting to it, and so we really do need your help. I find it very difficult to ask for money, but I know that with better vision, I could do a lot more for not only myself, but for my family and friends and people I meet every day. I want to start feeling like I can truly give back, instead of only feeling dependent upon things all the time. I want to see! Thankfully, your spare change lying around your house could do that for me! Please! I ask you all, with the most hope in my heart I’ve ever had, to Donate! Help me get to Thailand and be able to see well! Donate to this GoFundMe Page, please! It’s totally safe and there are tons of amazing and inspiring stories to browse through. I can’t express my gratitude and appreciation for all the help I’ve gotten so far, but we still have such a long way to go.
As of right now, we’re still thinking of different ways to raise money, so if you have any advice on fundraising, we’d love to hear it! Again, I appreciate the help so very much! Thank you for reading this blog! I honestly had no idea what to say. I hope I did well. I wish you all the best!
Facebook Page: Stem Cells for Debra Dollar