Joshua's Warriors- Fighting Battens Disease

Jn Gloski is organizing this fundraiser.

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Our son Joshua is 8 years old and has always been a whirlwind of fun and energy. When he was 4 years old we started to notice that he was not developing at the same rate as his peers and that he seemed to be struggling to see people. He was
soon diagnosed with Macular Dystrophy and was registered blind. Even with this diagnosis he just got on with life as much as he could and loved to run everywhere (with a guide runner).

As time has gone on his speech, cognitive skills and memory have been affected and dozens of tests came back with no results. He was signed up to a genetic study and in January this year we were invited to Bristol to find out the results. We
knew they had some kind of diagnosis for us but we were absolutely blindsided
when we were told he had Battens Disease CLN6 which was terminal.
Our world just seemed to fall apart. We were also told that our youngest son
Andrew may also have the disease as it is genetic and that any further children we were to have may also have the same disease.

The disease is degenerative and will take his motor skills, speech and ability to
swallow, bring difficult behaviour and involve epileptic seizures that are hard to
control and eventually end up taking his life before he reaches adolescence.

Even with this, our faith, family and friends keep us going and Joshua is generally a happy and resilient little fighter. We are already having to move house to make
it safer for him to get around and provide for his needs.

We are fundraising in order to fund the adaptions needed and provide care for
him as the disease takes further hold of him and make special memories
together as a family to remember the good times. We also want to be able to
fund research into the disease and help find a cure.

*****We won't let this disease beat us!*****