Triumph for Tomas
Donation protected
Tomas has Pelizaeus Merzbacher Disease. It's a rare genetic condition where the fatty tissue of his brain didn't grow.
PMD can affect vision, hearing, communication, motor skills and intellectual ability
PMD can also cause those with the extreme form to die before they reach adolescence.
There is currently NO charity for PMD in the UK
OUR MISSION IS To become a registered charity to help raise awareness of PMD and to create a fund for people to use to buy special equipment and toys.
In the future we also hope to be able to provide equipment in public places which make family days out more accessible and fun.
And possibly set up a helpline for those struggling with disabilty and it's challenges as well as offering help with bereveament.
PMD can affect vision, hearing, communication, motor skills and intellectual ability
PMD can also cause those with the extreme form to die before they reach adolescence.
There is currently NO charity for PMD in the UK
OUR MISSION IS To become a registered charity to help raise awareness of PMD and to create a fund for people to use to buy special equipment and toys.
In the future we also hope to be able to provide equipment in public places which make family days out more accessible and fun.
And possibly set up a helpline for those struggling with disabilty and it's challenges as well as offering help with bereveament.
Organizer
Emma Louise Stewart
Organizer