James & 401 Project 2k16 Challenge
Donation protected
James was diagnosed in 2014 with the rare genetic disorder known as MECP2 Duplication Syndrome, a condition that occurs almost exclusively in males and is characterised by severe intellectual disability, weak muscle tone, feeding difficulties, poor or absent speech, seizures that are difficult to control and muscle stiffness (spasticity). Most will lose previously acquired skills, and 50% will succumb to recurrent respiratory infections before age 25.
James has led a graceful journey through a difficult life, invoking love, and inspiring many to be the best version of themselves they can be. Now, at 23 years. James is completely wheelchair bound, incontinent, fed through a gastronomy device, has no language, is severely intellectually impaired and has neurologically driven breathing difficulties that have threatened his life on countless occassions. Still he fights, dancing to his own music and following his own life plan.
With James' diagnosis came the amazing opportunity to connect with other MECP2 families throughout the world and become part of the family driven fundraising initiative knwn as The 401 Project. The 401 Project has launched its 2K16 fundraising campaign and is asking families in the MECP2 Duplication community to accept the challenge of raising $2000 each to fast track clinical trials that are a result of Dr Zoghbi's research.
I ( James' mum, Kate) would like to commit to the 401 Project 2016 challenge of raising $2000, so that clinical trials, that may potentially reverse the symptoms of MECP2 Duplication, can be started sooner rather than later, and have adopted a friends suggestion of getting 200 people to donate $10. It is a brilliant idea, and so here goes. Please help us to raise $2000 to donate to The 401 Project and fund the research these boys so desperately require to have the possibility of leading a better quality of life. Namaste
Organizer
Kate Bridget Fitton
Organizer
Charlton, QLD