31st Mar 2017
Today we were lucky enough to be visited by a beautiful young lady named Matilda. Matilda is the older sister of one of our little Future Stars Roze. Her mother Elizabeth told us her story, a story that would leave not a dry eye in the room.
“Matilda was an absolutely normal child. She was walking, playing talking and laughing just like any other 2 year old. Her health suddenly started to take a turn for the worse. She was diagnosed with Batten Disease.” - Elizabeth
What is Batten Disease? “ a rare genetic disease… causes progressive neurodegeneration and loss of cognitive, motor, and visual functions. Typically between ages 2 and 4 with an average age of diagnosis of 4 years. The disease progression is rapid. Children typically present initially with seizures and/or vision impairment, followed by ataxia (lack of co-ordination), myoclonus (involuntary muscle twitching), impaired speech, cognitive impairment, and developmental regression. During the later stages of the disease, feeding and tending to everyday needs become very difficult. Some children get frequent chest infections. Death usually occurs between the ages of 6 and 12 years (but occasionally later).” - http://www.bounce4batten.com/batten-disease.html
How can I help? Future Stars will be supporting the Bounce4Batten awareness campaign. The Guinness World Record are attempting to build the largest online album of people jumping in the air. So all you have to do is take a photo with you jumping both feet of the ground and:
- Upload your photo to www.bounce4batten.com.au by 12am 31st March 2017
- Add your email address
You can make as many entries as you like so the more posts the better!
Lets all hold hands and support this wonderful cause.
PS: If you would like to learn more about Matilda’s story, visit her Facebook page on the link below.
If you'd like more information please do not hesitate to contact me on firstname.lastname@example.org
- Melanie [Behaviour Therapist and COO at Future Stars Early Learning]