I love someone with Prader Willi Syndrome

Ziva was born with a rare genetic disorder called Prader Willi Syndrome. From the day she was born it has been a fight to get her the right treatment, resources, and help so that she could thrive. Thanks to organizations like fpwr and pwsausa, research to help people with this disorder can happen.

There is no cure for PWS, What starts of as failure to thrive at birth changes to an insatiable appetite in which a PWS person could eat themself to death because they lack the ability to feel full.

Along with hyperphagia, PWS kiddos are born with low muscle tone. Their body is comprised of fat tissue verses muscle tissue. This make development both physically and mentally delayed.

From birth Ziva has had to fight to be where she is today. We travel back and forth to Oahu to see specialists several times a year. She has had to have physical therapy, occupational therapy, and speech therapy since she was in the nicu.

Her diet is very restrictive and she needs to be supervised to ensure that she does not eat what she is not supposed to.

Ziva is an amazing person who has persevered through every challenge presented to her. Please help her find a cure by purchasing a shirt to help raise awareness for this rare disease.

May is Prader Willi Syndrome Awareness month. Be a part of Ziva's splash and order a shirt to be work on the last day of school for the kids May 26 so that Z can see everyone wearing one. (Actual date is May 28).

Shirts are blue with an orange background on the graphic. The official color for PWS is orange, but it is rather difficult to get orange shirts right now.