Helping the Farley Family with Expenses

This is a fundraiser to help the Farley family as they navigate things in the upcoming months. I'm sharing the latest update that Leslie has about their sweet girl:

I typed this out weeks ago but I wasn’t sure I could actually post it because I never thought this would be our reality. But God had different plans that are beyond our understanding.

First, Aaron and I want to thank you all from the bottom of our hearts for praying relentlessly for us. Your love and support has helped to get us through the hardest, most darkest days of our life. It is by God’s grace that we have been able to find hope in the unimaginable.

Our precious Saylor Kate has been diagnosed with an extremely rare disease known as Mucolipidosis Type 4 or ML4 for short. Saylor is only 1 of 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, talk and go blind at an early age. Unfortunately ML4 is a progressive disease and because of its rarity there is no treatment at this time.

The FDA requires intensive studies of patients with the disease for an extended period of time before they will even consider treatment approval. We are honored that Saylor will now be a part of a clinical study being doing by the top scientists and doctors in the world at Massachusetts General Hospital and Harvard Medical. We will leave for Boston in May where our precious baby will be a part of something that could help many others.

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. Since there are so few of us, I have been able to connect with families all over the world who are also living this, it is comforting but also heartbreaking. When your child is given a diagnosis that will ultimately take their life, it is a feeling I simply cannot put into words. Aaron and I will go to the ends of the Earth for our baby 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.

As a parent, you pray that your children will be a light in this world and that they will change someone’s life for the better, Saylor at 2 years old has already done that. Our girl is extraordinary and she amazes me everyday. Although we don’t know what the future holds for her, we choose remain optimistic and we will do everything in our power to give her the best life ever!!

Please continue to pray for us as we adjust to our new path in life and as we try fight the current incurable while keeping life moving as normal as possible.

#findacureforML4 #someoneIknowiswaiting #teamsaylorkate