The Farr family story is one of ups and downs. Their daughter, Madelyn, was born with a rare genetic disorder. It is such a rare disorder that less than 200 children have it worldwide. Because it is so rare Madelyn was not diagnosed until scientists discovered the genetic anomaly in 2016, at the time Madelyn was 6 years old. It took another 2 years before the syndrome was given a name. The genetic disorder came to be known as White Sutton Syndrome. Very little research has been done and information about this syndrome is not widely available. It is a relatively recent discovery and it effects such a small group of individuals that there is not much interest or financial backing for research.
The lack of information left the Farr family wondering what to expect. They were able to find a few Facebook groups that had formed about White Sutton Syndrome, and they contacted other parents to gain some insight on this rare condition. This led to the discovery that children with White Sutton Syndrome had symptoms ranging across a broad spectrum. Some children were somewhat functional while others were not able to take care of themselves at all. Maddie was on the more severe side of that spectrum; however, the Farr family just saw a little girl that they loved, adored and cherished.
Among Maddie’s many symptoms was her inability to speak, so the Farr family used other forms of communication. Her mother and father loved having conversations with Maddie. They would speak to her, but she was unable to speak back, but she understood them. The family feels extremely fortunate to have the time that they did have with their precious little girl before she passed. However, they still had many things left they wanted to teach her, and they know they had much left to learn from Maddie.
The entire Farr family and everyone that knew Maddie is grateful to have been touched by someone so incredibly special. There is a hole in their collective hearts, and this drives them to give to other families in similar situations. The hope is that other donors will join them in the mission set forth by the Maddie Farr Foundation to enrich the lives of special needs children and their caretakers.