Help Amanda gain some sight back with digital aid

Hi All,

I am starting this gofundme with Amanda’s (my sister-in-law) permission. In late January of this year Amanda began experiencing loss of her central vision (the part that allows you to see in detail and distinguish certain colors). This happened over the course of a couple days to a week and she could only see shadows, or the outline of people and no longer could see details but only the outsides (peripheral vision) if she strains. As a nurse, working a new night shift position she knew the possibilities were not good but also knew it could be stress, changes in sleep pattern or really anything. She immediately went to an eye specialist and they confirmed that she had pressure around the optic nerve that was much higher than it should be and that she should go to the ER immediately for imaging to rule out a mass, ALS, MS and other less common reasons for sudden vision issues such as this. That began a week long admission inpatient running a battery of images and tests that turned up nothing abnormal but her vision continued to deteriorate over that week. After discharge with no answers and “normal” testing outside of the vision loss she could only make out the very top line of the vision acuity test the big letter E, but then again, she knew that was there from memory and being a nurse. Weeks turned into a month and finally a doctor at Mass Eye and Ear Hospital, after a second visit to the ER, diagnosed Amanda with Leber’s Hereditary Optic Neuropathy (LHON). This is a very, very rare Mitochodrial genetic mutation that affects all children along the maternal bloodline, and is passed from the mother to all offspring. Not all people with the gene mutation will become “an affected” person and go on to develop LHON. In the generations prior, and among Amanda’s immediate family, thankfully no one else has become an affected person but they carry the gene mutation and can at anytime become an affected person.

Unfortunately, for Amanda she has had to give up nursing, driving, her car, and many hobbies have had to shift as she’s dealt with this sudden vision loss that she is now considered legally blind. In true Amanda spirit she has started blogging and doing short social media videos to help people understand, to help people with vision impairment find strength and hope, and she’s even added videos of funny stories that most would’ve allowed to cause depression but she turns it into laughter as to help protect her mental health and help her not sink into the thoughts of what she can’t do but rather empower herself to find what she can do! She has reached out and been referred to governmental agencies in Massachusetts for help to learn how to be as independent as possible, to try to rehabilitate and sort out what role as a nurse she might be able to perform, and how to do everyday activities she needs to be able to do as a wife, and mother to her 6 year old and almost 3 year old. Amanda and Jason have been “stoic” as one doctor put it, but that doesn’t mean that it’s been easy, they just have approached this devastating and sudden change in life with grace and are learning as they go.

Insurance and government resources have helped purchase minor improvements through some readers but they aren’t always reliable and frankly, it’s been 6 months and very little has actually been delivered, which we know that many labor and resource shortages create that challenge.

I’ve done research and spoken with others that have been diagnosed with LHON across the world and by far the recommendation has been to purchase the OrCam Myeye 2 Smart Reader that allows a person with vision impairment to have 100 faces that are recognized, reads what’s in front of you, and transforms the ability for someone like Amanda to be able to do what she misses the most which is reading to Mia and Cal. Insurance will not cover this reader and virtual “eyes” for her, there is no government funding for it, so the cost of almost $5000 would be out-of-pocket for Amanda and Jason which is just not doable alone since they suddenly went from being a two income home to a one income home in a matter of days.

How can you help? Share this! We understand people are struggling financially due to the economy, and trust me, it’s taken a lot of convincing to get permission to ask this of people as Amanda and Jason are some of the first to offer help, but do not like to be a “burden” to their friends and family. We understand that not everyone can donate, if you can’t that’s perfectly fine, prayers, encouragement, sharing this and positive vibes are welcomed! If you have any funds that can be donated then that is also appreciated! It is our goal as Amanda’s family to support her and help her get this tool that would drastically change her ability to read, cook, recognize faces instead of just seeing shadows, differentiate colors again, and overall to feel more safe as she attempts to rehabilitate and gain back some of her independence.

Thank you all so much for reading this very long post. Thank you in advance for donating and/or sharing this, but most of all thank you for supporting and loving Amanda, Jason, Mia and Cal as they are walking this unexpected path in life with grace.

We love you all dearly!

Here is the website to the Orcam MyEye 2 in the event anyone wants to read up on it:

https://www.orcam.com/en/myeye2/