Our girl

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!

Love,
The Farley Family

ML4 is an autosomal recessive genetic disease, which means that it is genetically inherited through one’s parents, both of whom must be carriers of a defective gene, p19 which is responsible for ML4. Mutated versions of that gene can be passed along to one’s children who become carriers of the mutation but who show no signs of the disease. In order for a child to be affected by ML4, a child must receive a mutated copy of the gene from both the father and mother, as the diagram below shows. There is a 1 in 4 chance of having a child affected with ML4 when both parents carry the defective ML4 gene.

ML4 SAYLOR

By Shop Local Fundraising

ML4 SAYLOR