Give the Gift of Sight to Leah Freedman

Hello family, friends, and new friends!

I am Leah Freedman, a wife, mother of 3 children, and until recently, a nurse at a memory care facility. My life was turned upside down when I started going blind at 30.

This all started when I was 25 years old and started having issues seeing far. Pretty standard, right? Well, that is what I thought until I went to the eye doctor for a check-up and was told that I had too few rods and cones in my eyes but that my eyesight wouldn't get worse. So the doctor set me up with a pair of glasses and sent me on my way. To my dismay, the glasses didn't help. This pattern of doctor visits and glasses that didn't work continued over a 5-year span until, at the age of 30, the eye doctor I saw told me that something was wrong and that I needed to see a Retina Specialist.

During those five years, I had gone from a 20/40 to a 20/70 (or a 20/200 as another doctor told me), I had no vision in the center of my eye only in my peripheral, I was unable to see anything far, and was only able to see things close up if I was almost touching my nose to them. This meant I could no longer drive, do my job safely, see people's facial features, or watch TV. I'm sure you can imagine how this affected my daily life and my husband's and children's lives.

The first Retina Specialist I went to had a few suspicions as to what was happening with my eyes but wanted a more specialized Retina Specialist to see me and make the official diagnosis. Off to Retina Specialist number two, I went. The second specialist officially diagnosed me with Stargardt Disease. Stargardt Disease is a rare genetic eye disease that happens when fatty material builds up on the macula, which causes central vision blindness. The specialist informed me there was no cure and referred me to a Low Vision Specialist. The Low Vision Specialist would teach me to use tools to make daily life easier, but my vision would continue to get worse.

Following my diagnosis, I fell into a deep depression riddled with anxiety. How could this be it? I refused to believe that there was nothing else that could be done. That's when I started researching Stargardt Disease, nose to phone, and found the Stargardt Stem Cell trial.

In March of 2022, I was accepted into the trial and was able to travel to Coral Ridge, Florida, to participate in the SCOTS 2 - Stem Cell Ophthalmology Treatment Study II with Dr. Weiss! This treatment took me from complete loss of central vision to being able to see reasonably well close up, everything is more defined, and I can see slightly farther. The treatment was DEFINITELY a success! However, Dr. Weiss and I were both aware that my condition may require more than one treatment to restore my vision to the point that I am comfortable driving and returning to work.

Fortunately, I was informed this week that I have been accepted into the trial for a second time which has a treatment date of December 13, 2022!!! This means that my husband and I will need to fly down to Florida several days in advance for me to have pre-op testing done, and will be able to return home a few days after the surgery.

To get this life-changing surgery, I will have to pay $20,000 in advance, plus travel expenses and the cost of pre-op testing. This clinical trial is a patient-sponsored clinical study conducted by a group of research physicians, there is no grant or pharmaceutical support. Therefore, patients must pay for the study, which includes treatment at a fully licensed surgical center, operating room, anesthesia from Board Certified Anesthesiologists, bone marrow aspirations with a Board-Certified Orthopedic Surgeon, FDA-cleared medical device for separation of stem cells, technicians, etc. Unfortunately, none of these expenses are covered by health insurance.

This is why my family and I need your help. If you are able, please consider donating to my cause. My dream is to raise $22,000. Every dollar donated will help get us closer to that goal! The goal amount will cover all treatment costs, travel, etc. Thankfully a generous family member has agreed to loan us the money to make the treatment payment which is due in advance. This will allow us more time to raise the funds to repay this debt.

I greatly appreciate all the love and support everyone has shown me since I started this journey!!!

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