Prader- will syndrome is a genetic affecting chromosome 15, Noel has the paternal deletion. PWS is a cruel syndrome, sufferers will never feel full, a permanent hunger that will never be satiated. 
PWS also causes learning difficulties, behaviour problems, floppy, weak muscle- tone, global delay in development amongst a few. Without diet control, Noel is at risk from obesity which can be life-threatening. There is no cure for PWS.

We had a horrible birthing experience with Noel, he spent a week in NICU and not knowing what was wrong with our baby boy was awful. We had fertility help to conceive Noel and when we received the diagnosis, I grieved. Fast forward to now, Noel is incredible. He has taught me so many things, I fight for him on anything and everything. Noel attends mainstream school, he has his problems but as a family, we manage them. He is my little superstar.

PWSA is a charity that helps families like mine, with vital support, up to date literature, days out and so forth. PWSA is a lifeline, they rely on donations to provide an amazing service, without PWSA we would be lost. PWSA also help with must needed research in PWS.

Please support me in my first half marathon, support the charity and most of all it supports my Noel, seeing his mummy cross the finish line. every step and mile will get harder, but the pain will be worth it.

lots of love

karina x