Both myself & my dad are raising money for a charity very close to our heart - please read our amazing Luca's story below from his mum Yasmin.

My son Luca, is 20 months old, and has a rare genetic condition called prader willi syndrome, affecting around 1 in 20,000 births in the uk.

PWS is a genetic condition which occurs randomly at conception due to changes in chromosome 15, and affects part of the brain called the hypothalamus which is responsible for many body functions, such as appetite, hormone regulation, temperate regulation, and brain development.

Symptoms occur on a spectrum but the main struggles for babies with PWS is low muscle tone, poor feeding and developmental delay. Luca is the most delightful boy who shows his strength everyday. But the cruel nature of this condition is that in early childhood, they develop an uncontrollable hunger, called HYPERHAGIA. This means, no matter how much he eats, he will never feel full. This can of course lead to health problems such as obesity and is linked to a range of psychological challenges too.

The Foundation for Prader Willi Research UK and are the only UK Charity that focuses purely on research into Prader Willi Syndrome. It was created in 2010 to ensure the UK had an opportunity to help the global effort in eliminating the challenges of PWS.

They are a small charity, run predominantly by volunteers and the majority are parents or relatives of children with PWS.

It is currently a very exciting time for PWS Research.

Clinical trials looking at treatments for managing hunger in PWS are at a critical stage. Currently, there are 4 drugs being tested, with one of the most promising—DCCR—expected to receive an FDA decision in the coming months. We are hopeful this will mark an important step forward.

Although we’ve faced many challenges already in Luca’s life, I would never change Luca for the world, but I would like to change the world for Luca. And With the advancements in research and the medications I mentioned, with the help from donations, we can make that change a reality for Luca, and all the other children being born with pws.

Thank you so much. We are all wishing Evie so much luck and strength for her upcoming run and can’t thank her enough for thinking of our Luca and raising money for such an important charity and cause xxx