Our aim is simple, we want to provide factual information to families who have been given PMD as a diagnosis. Enable them to connect with other families and share stories, milestones, advice and feel less isolated and scared.
In the world we live today everyones answers are found by "Googling".
When we found out about Tomas this is what we did. We typed PMD into Google and found the information contradictory, terrifying and difficult to understand. We feared for his life, we didn't know where to turn, what to believe and what to do next..
This is why we decided to set up Triumph for Tomas.
The object of Triumph for Tomas is the promotion and protection of good health among people suffering from Pelizaeus-Merzbacher Disease (PMD) and gene-linked disorders known as the leukodystrophies, characterised by myelin sheath abnormalities, in particular but not exclusively by providing information, advice, practical support and grants of financial assistance to such people and their families and carers.
Triumph for Tomas has created a facebook page where we share the trails, tribulations and achievements of Tomas and other boys and their families to raise awareness of PMD to ensure it becomes better understood.
We have funded the very first UK PMD conference where 9 families got to meet, the boys played together and their parents shared their stories and gave each other hints and tips with dealing with symptoms.
We have provided sensory toys to local special needs schools.
Big Plans for the future:
We are currently creating a T4T fund where we hope people can request financial help to purchase equipment and toys which will help the affected person be able to comfortably enjoy and partake in family activites.
T4T will continue to help fund and orgaise UK based conferences/family get togethers.
We hope to set up a Stay and Play service, where children with PMD and other leukodystrophies can get together and play, whilst their parents chat and form friendships..
For these plans to come to life we need lots of funds. Triumph for Tomas raises money through lots of different means, and would love your support. Anything you can do to help us raise funds and awareness is greatly appreciated.
Triumph for Tomas Registered Charity Number 1166810