Born on February 2nd in 2021, our Saylor Kate has been the brightest light in all of our lives and we adore her more than she will ever know! At age 2, Saylor was diagnosed with an extremely rare disease known as Mucolipidosis Type 4 or ML4. Saylor is 1 of approximately only 100 people in the world that have this disease. ML4 is a lysosomal storage disorder where wastes that would normally be broken down and removed from healthy cells instead accumulate throughout the body, causing damage to the brain, central nervous system, retina and kidneys. One of the first effects of this disease is neurological inflammation throughout the brain, which causes cognitive and motor problems. Most children with the disease are never able walk or talk and they go blind at an early age. Unfortunately ML4 is a progressive disease and because of its rarity there is no treatment at this time.
Our hearts are shattered for not only us but for the other families that also have to watch their children suffer from this horrible disease. Aaron and I will go to the ends of the Earth for our baby girl until there is a treatment for her disease. We have committed to make it our life’s mission to raise awareness and help the ML4 foundation continue to raise money to fund research and to finding a treatment for our daughter and the other precious lives fighting ML4.
Your donation means the world to us and we are forever grateful for your generosity. We can’t thank you enough.
God bless you!
The Farley Family
ABOUT THE ML4 FOUNDATION
ML4 is a genetic disease caused by the mutation of a single gene that results in the loss of a protein (MCLN1). This incredibly important protein is required by the body for normal functioning: without MCLN1, children and adults with ML4 suffer from progressive and debilitating loss of gross and small motor function, go blind, develop problems chewing and swallowing, rarely have the ability to speak, cannot walk, and over time, lose many abilities that they work hard to acquire when they are young.
The funds raised by the ML4 Foundation are directed to a research program at Massachusetts General Hospital in Boston. We have been working for several years with a team there to create a gene therapy to treat ML4. We are also funding a large-scale natural history study of ML4, bringing ML4 patients from around the world to the MGH clinic to be seen by specialists in this disease. YOUR DONATIONS made this work possible and allow it to continue at a speedy pace!
If you prefer to donate by check, you may mail it to the following address, and note that it is given in honor of Saylor Farley.
Mucolipidosis IV Foundation
1440 Spring Street NW
Atlanta, Georgia 30309
The ML4 Foundation is a U.S. 501 (c)(3) nonprofit charitable organization.
Tax ID 13-3633501