STAR child with her mother.


This is the English version, you find the original version below

A note from the Taylor family

We are the Taylor Family! We would like to thank you for taking the time to visit our section of the website to learn more about our family, our special Madi, and our journey.

Our journey with this disease started shortly after Madi was born. We found that our beautiful baby girl wasn’t meeting her milestones and presented with some alarming characteristics. Being a military family, away from extended familial support, the early years were difficult and emotionally daunting. We were moved multiple times around the country in search of a diagnosis. We spent countless hours in therapy and doctors offices with the hopes of identifying her illness and praying there was a cure.

In January 2013, after losing faith that we would ever know what was ailing our Madi, a wonderful group of doctors at John’s Hopkins was able to finally give us  our diagnosis. We immediately took to the Internet in search of information and support. We were disheartened to find that there wasn’t much going on in the way of research or foundational support for families. Our world immediately got a whole lot smaller. The silver lining to it all, was a small Facebook group created by and dedicated to families who were living with this disease. We suddenly felt a little less lonely.

We would like to take this opportunity to thank those who have supported us through the years and those who continue to support us every day. To our Keana, you have been the most caring and resilient big sister we could have ever asked for. The love and support  you have given to your baby sister knows no bounds. We know your journey has not been easy and we are so thankful for you and your gentle soul. We love you both so much.

We are beyond amazed at the efforts put forth by the Foglio family, the team of doctors, and all of the Salla families in making this foundation a reality. We are excited to partner with families and doctors to advance research and look forward to  finding a cure. We have been given a new sense of hope for Madi’s future and those who may come after her.

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