Joeys Metachromatic Leukodystrophy Battle

I am setting up this go fund me page for my sister Katie, my nephew Joey and Joey’s Dad Liam.

Joey has a very rare progressive brain disease called Metachromatic Leukodystrophy (MLD). There’s currently no cure for this disease and Joey isn’t eligible for any treatment due to already being symptomatic. This is a progressive disease and it’s destroying the white matter around Joey’s brain. It’s already taken away Joey’s ability to walk, crawl, sit unaided, his cognitive development and his speech and it will continue to take more , Sadly, infants who develop signs and symptoms during the first two years of life are likely to die during childhood. I can't imagine what they are going through as first time parents.

Not all equipment is available on the NHS and we have no idea how long we have left, it becomes more and more difficult to leave the house without proper equipment and means my sister has to carry him around which is extremely difficult.

Should any trails become available in other countries, any hopeful funds will help them to travel.

The time to make memories is now and they just need a little help to make this possible,

We would appreciate this being shared so we can raise awareness of this disease so nobody else has to go through the pain, nobody deserves to live this nightmare and if nothing else we would appreciate your thoughts and prayers through this difficult time.

If you would like to read more about this disease you can find information on this link

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/metachromatic-leukodystrophy-late-infantile-form/

We thank you from the bottom of our hearts