Vision Warrior

I am reaching out to the community in hopes of helping a beautiful family, who could use a little support right now for their 9-year-old daughter, Addy. Addy was recently diagnosed with a degenerative eye disease, Stargardt Disease, and is now declared legally blind.

Devastation is not the word to describe how her family feels but also as their friend I know that our community is devastated. Addy is a bundle of happiness, joy and sunshine all rolled into one amazing little girl. She has touched and continues to touch many hearts throughout the Nelson Community. She is our little “vision warrior”.

I want to support Addy and her family by kindly asking for donations to help cover some initial costs the family has absorbed since insurance does not cover low vision or blindness. This would be of tremendous help to the family until they gain services from the National Foundation for the Blind or available charities.

The funds would aid in purchasing special equipment needed now and hopefully in the future. In addition, Addy may also qualify for a clinical trial in New York, but tests, travel, lodging, and food is all out of pocket and is expected to be quite exorbitant, (See below for information regarding the clinical trial). Often people have to rely on charities, grants, and public services (if available) for help. To give you an idea of the expense of this disease, her parents paid $4,000.00 for 2 pairs of special glasses that will allow her to read and see distance until her eyes deteriorate further. Her family is going to “pay it forward” and donate the glasses once they no longer help Addy.

Addy and her family had been seeking answers for 2 long years and the journey has been a rough road. Here is a bit of background in how they noticed something was wrong all the way to getting her final diagnosis.

Addy’s parents first noticed something was wrong with her vision when she wouldn’t look directly into the camera taking family photos, when talking to her she wasn’t able to look into their eyes, she struggled to read, holding books up to her nose, standing in front of the T.V. within inches, and then holding her iPad so close to her face it looked impossible that she would see the images. Teachers that worked with Addy also noticed something was wrong as well and advocated for her by moving her closer to the front of the room, enlarging the print on paper and overall doing anything to help.

All the while they were searching for answers…not knowing these were symptoms of a sinister aggressive eye disease that will progress eventually leading to more vision loss, currently Addy’s vision is 20/200 and 20/120 legally blind.

The entire time they were trying to figure the problem out, Addy remained happy, joyous, active, doing gymnastics, playing soccer, running, playing tag, all the fun games that kids participate. No one would have ever suspected Addy was going blind.

They took her to multiple doctors’ only to have them say she wasn’t taking the vision test seriously, she just has a “weak” eye, prescribing the wearing of a patch for 6 months with no improvement to its stress related and there is nothing further I can do.

Both parents took that news very hard, and then tried to pinpoint the stress causing her vision impairment. They came up empty for an answer other than Addy is not stressed she is a happy little girl with a great home life. After much introspection, they realized that it was time to take a more aggressive approach to find answers.

They put their frustration and anger to work vehemently seeking out another doctor, an ophthalmologist at UVA, who definitively diagnosed Addy. The doctor was emotional in her delivery, shedding tears, genuinely caring for and understanding how it was going to affect Addy and her family.

The next step in this journey was explaining to their daughter she is losing her vision and there is no cure. Both said this was single handedly the hardest thing they’ve ever done in their entire life.

How did Addy take the news? Tears, hugs, cuddles then “can I go jump on the trampoline”? She has been a champion, an inspiration, a warrior. All of us believe she’s struggled for longer than anyone picked up on it, and she has adapted to her lack of sight through her own ingenuity. She is an athlete, comedian, artist and above all is a talented level 3 gymnast. Her wonderful coaches at Classics Gymnastics are all fully aware of her “different ability”, and don’t expect any less from her. She is thriving and is an inspiration to all that know because this has not stopped her from doing what she loves.

There is much to learn about this disease, about being blind and what her new needs will be. The family has expressed much gratitude and appreciation for the support of friends, Teachers, and Coaches.

Please take a moment and click on the links to learn about the clinical trial and the disease itself. The family’s first trip for genetic testing is at the end of April to the National Institute of Health, once the genetics test results are in, they can begin the clinical trial.

Also, any funds exceeding the desired amount will be deposited in Addy’s investment account, accessible when she turns 18.

Phase 2 Tolerability and Effects of ALK-001 on Stargardt Disease - Full Text View - ClinicalTrials.gov

Open Access Genetic Testing Program — Foundation Fighting Blindness