Josh Thomas recently returned from his first round of treatment in the USA for a rare type of malformation of the blood vessels of his brain.
Born with Vein of Galen Malformation (VGM), Josh’s condition has deteriorated since 2010.
His walking wasn’t as smooth, his speech wasn’t as clear and his memory was fading.
But since return from the USA, his family have seen drastic improvement.
On Saturday the 27 July, Josh, 22, was joined by many of his family and friends for a fundraiser. Hosted in the Casey City Church auditorium, the family were able to raise $5,000 for Josh’s next round of treatment in the USA.
The Institute of Neurological Recovery in Florida has been investigating the use of a comparatively new drug called Etanercept, developed for inflammatory diseases such as arthritis.
The drug targets a protein called tumour necrosis factor, which clusters around damaged areas of the brain and in excess can stop cell regrowth, and is now being used in America for stroke victims.
This treatment has visibly helped in Joshua’s case to remove the inflammation caused by the stroke and enabled Josh to function far better than he has been.
After 18 months doctors have tried to stabilise him and halt the deterioration but nothing is working.
His specialists believe the blood vessels in his brain are becoming tired and are struggling to keep up with the abnormal flow within his brain.
VGM consists of abnormal connections between the arteries and deep draining veins, and lacks capillaries to slow the blood flow between arteries and veins.
Without capillaries, blood is shunted directly into the vein at high output. This, in turn, increases the workload of the heart.
At the fundraiser night, Hope Australia Soccer Academy (HASA), a unique not-for-profit program also lent their support.
Lamartine da Silva and Joaquim Santos Silva, soccer coaches from Brazil, each gave an encouraging word and donated a World Cup soccer jersey for the auction that helped raise money for Josh.
Through the generous donations of time and funds, this family is now one step closer to their dream to get Joshua back to Florida for more life changing treatment in six to 12 months.
A GoFundMe page has been set up by family. To donate, visit: https://au.gofundme.com/fpvum-josh039s-journey.
