We are doing the Alton towers 5k on behalf of NPUK!!!!

We are doing this in the name our our little NPC warrior, Kara.

Kara was diagnosed with Niemann-Pick disease type C in April. Since then we have received so much support from NPUK. They really are a lifeline for anything families like ours need or just want to talk.

Neimann-pick is a degenerative condition that has seen our little girl go from running talking dressing and toileting by herself to needing all personal care being done for her, struggling with walking and completely non-verbal. She also has Cataplexy, autism and mild hearing loss. More recently we have started to see seizure activity and struggling with foods.

NPUK have been with us through this and really helped us feel seen, Heard, supported and mostly not Alone on our journey