In the first few weeks of McKinley's life, her parents noticed something strange about her eyes. They would shake whenever she tried to focus, she would have difficulties tracking, and they noticed a lack of eye contact. After countless referrals and tests, including electroretinography (ERG), their fears were confirmed that McKinley's retinal response was flat, which meant their daughter was blind. She can see bright light, but no detail.
Once the extent of McKinley’s visual impairment was confirmed, she began a rigorous therapy program, including OT, PT, vision, speech and orientation & mobility (including working with McKinley on how to use a cane), provided by therapists at Vision Forward.
On May 24, 2017, through genetic testing, McKinley was formally diagnosed with Leber's Congenital Amaurosis (LCA), which is a rare inherited retinal disease affecting only a few thousand people in the U.S. Patients with LCA are generally born with very limited vision, almost always progressing to total blindness. There is no known cure for LCA ...or was...until...
On December 19th, 2017, McKinley and her family received news of a Christmas miracle: the FDA had approved the nation's first gene therapy for an inherited disease. This first ever treatment of its kind just so happened to be an exact match for McKinley’s rare diagnosis. The gene therapy called Luxturna (created by Spark Therapeutics) is an injection given directly to patients' eyes to replace the defective gene. Patients who received the treatment have described seeing snow, stars, the moon and even their parents faces for the first time!
With years of expensive research and a very limited LCA population, the company has announced the price at $850,000 ($425,000 per eye, with injections needed to be administered separately, but no fewer than 6 days apart). It is still uncertain what, if any, costs will be covered by insurance. If this money can be raised, McKinley could receive the genetic therapy as early as this Spring--before she is even 3 years old! As with any visually impaired child, McKinley has experienced various developmental delays and the hope is that early treatment will only lead to a "brighter" future.
"We are so grateful for all of the support McKinley has recieved, and continues to receive, on her journey. Your contribution to this GoFundMe could help provide a miracle for our daughter. Thank you so much for helping us give our daughter the opportunity to see for the very first time!" - Julie and Parker
To follow McKinley's journey, please visit: https://www.facebook.com/mckinleysoveysjourney/
- Michael Korsmeyer
- Ivy Mitchell
- Simon Fresquez
- Dawn Purpura
Organizer and beneficiary
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