Help Amy Fight Against a Rare and Complex Eye Condition

Dear Family, Friends, and Supporters,

My name is Thushan, and I am reaching out to you on behalf of my brave and resilient daughter, Amy, who has been battling a severe and complex eye condition. Amy is only 19 years old and has already endured more than most people face in a lifetime.

On May 7th, 2024, Amy began experiencing symptoms of bilateral conjunctivitis. Her eyes were extremely red, swollen, and painful, with a tremendous sensitivity to light. Amy was taken to the hospital, where she was admitted. Doctors ran every possible test to treat Amy’s symptoms, but every blood test, culture, and imaging study failed to provide us with answers. She was treated with a broad spectrum of IV antibiotics, antivirals, eye drops, and oral medications. Once stable, she was discharged and referred to see an ophthalmologist/cornea specialist.

After the evaluation by the cornea specialist, we heard what no parent wants to hear from a doctor: “I have never seen anything like this” and “I’m not sure what this is.” She was started once again on oral medications and eye drops, but this time at the highest dose, including steroids. Nothing seemed to give her relief, and she endured excruciating pain. Day by day, her vision was deteriorating. Her bedroom and even bathroom had to be completely darkened. Eventually, her corneas broke down, and whatever was causing this infiltrated deeper into her eye. Tissue samples were taken on three different occasions and sent for culture. All cultures came back negative.

Without an actual diagnosis, she underwent cornea treatments that included amniotic membranes, bandage contact lenses, and more eye drops. Amy was referred to a rheumatologist to explore the possibility of an autoimmune disease being the cause. She underwent extensive testing and imaging, but again, nothing provided us with answers. After numerous specialist visits and hospital admissions, we were sent to Philadelphia to consult with two cornea specialists. As puzzled as all the other doctors by Amy’s condition, they started her on a new regimen of medications, eye drops, and plasma serum drops in hopes of closing and healing her corneas. They have diagnosed her symptoms as bilateral, non-healing epithelial defects and severe epithelial keratopathy. In other words, for whatever reason, her corneas are not healing despite all methods used. These conditions, along with medication side effects, have caused significant pain, vision problems, and a drastic impact on her quality of life.

Despite the efforts of numerous medical professionals, her condition has been challenging to treat. She has undergone multiple treatments, including:

• Antibiotics and antivirals at the highest doses.

• Steroids and immunosuppressants to manage inflammation.

• Specialized contact lenses (BSCLs) to protect her corneas.

• Eye drops and gels.

• Amniotic membrane treatment.

• Plasma serum drops.

In addition to these treatments, Amy's condition requires frequent travel to see specialists equipped to handle her complex needs. This travel has added to the financial strain on our family.

Amy’s care and almost daily doctor appointments have become almost 100% of my wife's focus, while we are juggling all the other household responsibilities. With three younger siblings, the demands of childcare, activities, sports, grocery shopping, and more have become overwhelming. There simply aren’t enough hours in the day to manage everything. This added stress of watching over and providing for three younger children has made an already challenging situation even more difficult.

As a next resort, cornea specialists have decided to use a treatment with a medication called Oxervate in hopes of healing her damaged corneas. This medication is crucial for her recovery but comes with an extremely high cost.

Why We Need Your Help:

The cost of Amy's ongoing treatment, medications, specialist visits, and travel has been overwhelming. While we are doing everything we can to support her, the financial burden is becoming increasingly difficult to manage. We are asking for your help to cover the costs associated with her continued care, including:

• Specialized medical treatments and medications.

• The expensive but essential medication, Oxervate.

• Regular visits to cornea specialists and the associated travel expenses.

• Additional diagnostic tests and possible future procedures.

• Ongoing care and rehabilitation to help restore her vision.

How You Can Help:

Any contribution, no matter how small, will make a significant difference in Amy's journey toward recovery. Your support will not only help cover the financial costs but also provide Amy with the hope and strength she needs to keep fighting. We won’t stop fighting alongside her to see her continue the journey to become the pediatrician she dreams of becoming one day.

Thank you from the bottom of our hearts for your kindness, generosity, and prayers during this challenging time. Please share this campaign with your network to help us reach as many people as possible.

With gratitude,

Thushan