The following is an update from Lezli herself as of 12/4/2018:
It is Lezli here, literally swallowing my pride. Since the start of the year I have been in an ongoing argument for MONTHS with Shahid, and others, about raising the total goal of my fundraiser, to better reflect what I need for my eye surgery. I have been arguing that it just feels like I’m saying “GIVE ME MORE MONEY!”. He has argued that I am asking no one for money, but that he is asking others if they want to help me reach my new goal (with my permission), which donators can then choose to do so of their own choice. Shahid is the one who created this fundraiser originally, after I had said I didn’t want a fundraiser because I didn’t want to ask anyone for money (sensing a theme here?). He decided to ask everyone on my behalf and within days we had most of the money for the cross-linking procedure to HALT my eye condition.
Shahid, his wife, and other close friends have been arguing that I need to raise the level on my fundraiser so it can also cover the procedure to CORRECT my eye condition as well as HALT my Keratoconus (giving me normal eyesight again!). People are very confronted by how bad my eyesight is now—especially after seeing me get around in person. I can no longer hide it and they say it’s not a matter of wanting to get it done, but NEEDING to get it done, because they argue my quality of life is severely compromised. I have also had to be honest and let my boss (also Shahid) know what I cannot do for work now, because I literally cannot see well enough to do certain publishing tasks.
Shahid originally put a total of $8000 on the fundraiser, and after I confirmed an appointment with Dr. Brian, we realized the total raised was not enough, with the travel costs on top of what the HALTING procedure actually cost ($8800, plus exam fee of $410, plus supplement cost of $233, etc.), so the fundraiser amount was raised last year to reflect that amount needed, and to cover the fee GoFundMe takes out of the total donation amount.
I now have a confirmed appointment to have my surgery on March 26th-28th, 2020, with a leading surgeon in the field (who pioneered the treatments). He is Dr. Brian Boxer Wachler, and people travel around the world for him to treat them. Unfortunately, the GoFundMe level has to be raised even more now, because originally the fundraiser was raising money to just HALT my eye condition, so I would not get more blind. However, I was too sick to have the eye surgery in February, when it had been booked (being stuck in Australia having surgery on my abdomen at the same time) and in the last six months my eye condition has worsened dramatically—so I now also need to pay to CORRECT my eye condition, after paying to HALT it, just so I can have quality of life back. Just so I can see the world again.
You see, the theory by my endocrinologist—who admits to not being an expert on Keratoconus, but looked up how the condition alters the eyes—is that my thyroiditis-created hyperthyroidism and the thyroid storm I went on to have two months ago (where your body cascades into extreme temps, heart rate and bp and literally bugs out the eyes), greatly increased the pressure in my eyes, presumably making the cornea-stretching in them worse. I now can barely read without a lot of trouble…and the biggest development is I had to get a blind cane. Yes, that is right. I need a cane to walk in congested places now, or places where I cannot judge my eyes well enough not to walk into things or people.
This development has been incredibly confronting, as was the realization that I now see 40 duplications of everything. That is right: 40. When I first got the cane and opened it up, I was shaking. It kind of felt like I now had a visible symbol of my disability—that using it meant I had failed to conquer something I should have been able to manage. Before this moment, I had been able to work around my condition, and overcome it with certain allowances to my life, but the cane felt like proof it is finally starting to rule me.
So I literally had to leave the cane out and put together (it folds up into a small bag), so I could get used to it. It might sound weird, but I slept with it in the bed, looking at it for some time each day before sleep, to tell myself it’s not a symbol of me failing, but a symbol of me accepting help in guidance around the world.
Because the simple fact is, I NEED the help now. Before I could get around without needing my eyes CORRECTED, but now my eyes are keeping me from working, from seeing the beauty of the world.
I once told those close to me in a vulnerable moment that the only time I can see the world as they do is when I cry. (Yes, it is as bittersweet as it sounds.) It is always an unexpected and beautiful moment that takes my breath away, when the tears fill my eyes in such a way for a blissful moment before gravity forces them to fall, giving my corneas an artificial dome shape again—and the world becomes so beautifully crisp again. I always gasp, and then the tears fall. The only other time I see clearly is in my dreams—and I so want my dreams to come true. I NEED for them to come true.
So below is the cost it will take to fix my eye condition and the details of my surgery date. The cost for INTACS is the most expensive part, but that is the part that will CORRECT my vision (the insertion of rings that literally will reshape my cornea into a novel curve). I will never be this blind again, if we are able to raise enough money to get that done.
I have attached a photo of me with the cane in question, not realizing until after that it captured the cone-like shape my Keratoconus condition creates in my corneas, resulting in the distortion of my vision. It is often hard to get just the right angle to capture the unusual shape of my eyes, and one of my eyes was on just the right angle in this shot to see it. It seems fitting in that it showed up in this photo, of all photos.
Shahid is increasing the GoFundMe fundraiser amount to $24,000, slightly higher than that quoted by the surgeon to account for travel costs and GoFundMe fees (5% fee plus 2.9% processing fee for a total of 7.9%). Currently we have $8376.64 raised, after GoFundMe took their fees out of the $9155 donated. is the particulars of my upcoming procedure and the costs. Thank you, from the bottom of my heart, for reading my post, and for all the support I have received over the years with this condition. It truly is invaluable:
1. Appointment Dates and Times
Day 1 (Initial exam and tests): Thursday, March 26, 2020 at 2pm, 2-3 hours.
Day 2 (Procedure day): Friday, March 27, 2020 at TBD, 4-6 hours
Day 3 (1-day postop exam): Saturday, March 28, 2020 at 11am, 30-60 minutes
2. Pricing Information
Vitamin Supplements: Optimal Eye is an antioxidant that helps speed up the healing process and is a natural anti-aging for the eyes. Optimal Flax will help improve the quality of your tear film so that your eyes do not feel as dry during healing. KC Defense supports the long-term stability of the cornea and helps to reduce the need for enhancement. These vitamins can be purchased on the day of the procedure in our office. $233
Prescriptions: Prescription prices can vary from $80-$500 depending on the recommended treatments after the exam.
Maximum total for procedure: $20,723-$21,143
Please note that payment will be collected on the day of the exam at the conclusion of the evaluation.
Update on 12/18/2019: Lezli has now scheduled her surgery for April, 2020, after finally being diagnosed with a "thyroid storm" which has been causing all her health problems the past few years (including a hospital visit and a surgery that meant she had to cancel her previous eye surgery appointments! The money raised in this GoFundMe goes towards HALTING her Keratoconus, not CORRECTING her eyesight (which would cost double the amount that was raised in this GoFundMe)! To know that Lezli's eye condition will not get worse after surgery means a lot to her! She's so excited she can finally have the procedure, and it is all thanks to her donors here! Next goal: save for her eyes to be corrected/fixed.)
Update on 6/15/2018: Of the $8300 Lezli received in donations so far, $7,593.39 was the total that was transferred to her bank! After the entire cost for the procedure was worked out with the eye specialist it is not quite enough to cover the cross-linking procedure which will halt her eye condition, so the fundraiser total was raised accordingly, although she expects to save the difference herself, if she can.
Many of you know Lesley Robyn Glover (and I would like to introduce you to her if you don't). She writes sf/fantasy as Lezli Robyn and works as my Assistant Publisher for Arc Manor. (She can be found here: www.lezlirobyn.com or https://www.facebook.com/lezlirobynglover!)
What many of you who already know her may not realize is that due to a rare eye disorder, which is progressively getting worse, she is now considered legally blind without correction (she cannot read the any number on eye charts).
When Lezli was 23 she was diagnosed with an unusual condition, Keratoconus, which is characterized by a progressive conical protusion of the cornea that results in her eyesight being distorted to the point where she sees multiple images on top of each other, as well as distortions, ghosting and halos.
(Diagram: Click here for extensive information about the condition on the National Keratoconus Foundation's website, and why Lezli sees this way.)
As her condition has progressed, her cornea has decreased in thickness and the cone like shapes on her eyes have become more pronounced. Her eyesight has deteriorated over the years to the point that she often can't recognize people until they are a yard's distance of her.
Since this is a progressive disease, her condition continues to get worse every year. But there is a new treatment to halt this progression, and maybe even reverse some of it.
(Photo: If you look at her eyes, you can see the cone shape of her corneas.)
Since coming to work for me, I have seen how much more difficult it is becoming for her to cope with her work as well as every-day activities as she deals with the lack of depth perception and significant distortions to the sights we take for granted.
On her return to Australia to see family, Lezli was able to get a full eye exam where they took topographical maps of her eyes, and they did multiple focus and measurement tests of various factors in her eyes to determine she is now legally blind without any form of correction.
And that is where you kind folk come in. It used to be that the only true effective treatment for Keratoconus was to get transplants, which is both risky and extremely expensive. However, in the last five years a new treatment has become available called cross-linking. Now, I confess to not knowing much about it when she first sent me the update, but I have since looked it up and I can see why she was so excited about it.
(Click the link here for comprehensive and detailed explanation of the surgical procedure, by William Trattler, MD, a board-certified ophthalmologist specializing in refractive, corneal and cataract eye surgery.)
Since I pay Lezli Robyn I know what she earns--and it is not enough to be able to easily afford to pay for the treatment without which her eyesight will continue to get worse. I am also aware of financial and medical difficulties her parents are undergoing and it is almost impossible for them to fund the treatment.
Currently a minimum of $2500 for each eye is required just for the basic procedure (not including specialist tests. medications, etc.) in Australia and it's not covered by Lezli's Australian medicare (see Optometry Australia's article about it here ). The cost in the US, of course, can be significantly greater (up to $4000 per eye!) so it may actually be cheaper for her to fly to Australia to get the procedure rather than have it done in the US.
So I am asking our friends to join me in raising money for Lezli to be able to get this procedure done as soon as possible--before her eyesight gets worse. Keratoconus does eventually slow down in its progression but there is no specific timeframe, and in Lezli's case the progression has consistently continued unabated.
The procedure (more detail below) has an almost perfect record of halting this progression and it may even improve her eyesight! (In a minority of cases, the procedure not only halts the progression but it often improves the vision.)
Moreover, after the condition is halted, her cornea's will also stop changing shape so regularly, so she would be able to get contacts or glasses to help her see better--her current degenerating condition does not allow any prescription glasses/lenses.
At the moment Lezli believes $8000 should cover most, of it, and I thank you for any amount you can donate--even if it is only $5!
A litte more about cross-linking: "Collagen cross-linking is a quite recent medical procedure that employs the use of ultra-violet light and drops to help slow or completely half the condition. Under topic anaesthesia, the top layer of the cornea is loosened and the riboflavin drops (vitamin B2) are dripped into it for 30 minutes. This light causes the riboflavin to fluoresce, which as the effect of strengthening the bonds between the collagen molecules--stiffening the collagen fibers, ultimately strengthening the cornea."
While it isn't a cure for Lezli's condition, it does halt further progression of the condition, and has been shown to strengthen the cornea by around 300%.
"The results over a period of 3 and 5 years of a Dresden clinical study have indicated that in the case of 60 eyes researched, the progression of Keratoconus had been stopped in all cases. In 31 of the eyes there was a reversal and flattening of the cornea and visual acuity was improved. Similar success was found in a later study in which 281 eyes were observed for up to 6 years following the procedure. Only 2 of the patients showed signs of any further progression of the disorder, and they both responded successfully to re-treatment."
- Jack McDevitt
- Bradley Kirschner
- Patrice Biskynis
- Taras Wolansky
Organizer and beneficiary
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