Chloe Saxby is a beautiful 5 year old girl from Australia who loves to talk about Kindergarten. In January of 2012 she was running, riding a bike, dancing and acting like any other three year old. In February that year she became ill with a virus and was vomiting. After she had been without vomiting and fever for one week her mom and dad took her back to her preschool class. They received a call from her teacher; she had been stumbling and could not climb out of the sandbox herself. Her parents took her straight to her doctor. After numerous doctor visits and testing they were given a diagnosis in April. Chloe had Vanishing White Matter Disease, a form of Leukodystrophy; a degenerative brain disease with no forms of treatment or cure at this time. There are only two institutions in the world that are even searching for a treatment.
The family was sent to Sydney Children’s Hospital where they were met by a team of neurologists who then forwarded her information to the Netherlands to a doctor who is an expert on White Matter Disease. They were told how the white matter of the brain is composed of fibers coated in a fatty covering called myelin. In White Matter Disease this myelin is damaged and disappears which makes the nerve impulses slow down or fail.
Slowly she has been losing her ability to function properly. She’s no longer able to stand or walk and has very little use of her arms.
So how does this heart wrenching stories make its way into my 31 Days of Good News & Good People doing Good Things? Well, it can be amazing to watch how people can reach deep into their hearts and pockets to come to the aid of a family going through life shattering changes.
When their town of Woonona, Australia heard of the family’s situation they decided they just had to help. Unable to deliver a treatment plan or cure they did one thing that was in their power. Participation came from a number of local businesses from school to swim clubs. Their banded efforts raised nearly $40,000 to convert the family’s van into one with wheelchair access for Chloe. Efforts to raise funds for treatment and research for a cure still continue through marathons and other fundraising efforts.
Mrs. Saxby is starting a fundraiser and is one of four women worldwide that have come together to raise funds and sponsor a conference to help aid further research. If you’d like to learn more or donate go to http://www.chloesaxby.com.au/ .
This post is part of the Nester’s 31 Day Challenge; Writing on the same topic each day of the month of October. Click on over to the Challenge to find a number of topics and authors ranging from Simplicity & Organizing to Personal Endeavors. You can head back here and scroll to the bottom of this post for a listing of all 31 days of Good News & Good People Doing Good Things.