May marks Prader-Willi Syndrome (PWS) Awareness Month, shedding light on the complex genetic disorder that brings various challenges to individuals. However, it's important to remember that PWS doesn't define the incredible individuals living with it.
To honor this month, we are sharing the empowering stories of three remarkable families from our HopeFULL newsletter. Through their stories, we'll celebrate the strengths and positive impact these individuals bring to the world. Get ready to be inspired by their journeys and the extraordinary spirit of those living with PWS!
Meet Samantha, 19
Written by Eisa Rosas, Samantha's mom
Samantha has always loved learning, school, art, and spending time with friends and family, especially watching scary movies and playing board games and puzzles. Family game night is one of her favorites!
What I Love About Being Samantha's Mom
Samantha is always so positive! She is always up for trying new things, and has a warm, loving disposition. She gives everything her all. And as my #1 sidekick, I truly just love hanging out with her, doing our Starbucks runs, and going on errands - she is so helpful. She makes me proud every day!
An Exciting Achievement
Samantha has always been a hardworking student. And now that she is in college, that has not changed. She has made the Dean's Honor List (3.0+) her last 3 semesters and will do it again this semester. She is almost done (5 more classes!) and will soon graduate with her AA Degree and will transfer to California State University, Fullerton. We are so proud of her hard work and dedication!
"Where there is life, there is hope!" Our loved ones with PWS amaze me everyday and I am grateful for all the research FPWR is a part of. Because of this, there is a light at the end of the tunnel.
Meet Silas, 3
Written by Jennifer Lloyd, Silas's mom
Silas loves pop-its, books, and music. The boy loves to dance! Silas is a huge flirt and is called the mayor at his outpatient facility because everyone knows him!
What I Love About Being Silas's Mom
He’s the happiest, sweetest boy that has taught me so much patience and perseverance. He inspires me to do hard things as he does them daily.
Our Upcoming One Small Step Walk
We decided to host a One Small Step to bring awareness to PWS and HOPE for Silas’s future. We’re very thankful for all of those who assist in helping to advance treatments for PWS, and we want to be part of the solution! We also think it's a great way to get active and bring the community together.
So come join us at One Small Step New Jersey, Saturday, May 18, at Fasola Park in Deptford, NJ!
Meet Major, 6
Written Marvin Rhodes, Major's dad
Major likes electronics (and can learn to operate any device placed in his hands), wrestling, and antagonizing — err, playing with his two younger sisters.
What I Love About Being Major's Dad
I love that I can’t get enough of him. Major is my heart, my joy. I adore his gentle spirit, ever-developing wit, the warmth of his smile, the way he embraces me when I pick him up — I just love HIM. He’s the light of my life.
A Message for Anyone New to the PWS Parenting Journey
Regardless of how you feel at this moment, please know that PWS will NEVER define your child. As time passes, you’ll wonder how you ever thought PWS was big enough to outweigh the light, the love, the significance and the beauty your child brings to you and to this world.
Hope on the Horizon: Together, We Make a Difference
This PWS Awareness Month, let's hold onto the belief that together, we make a difference. By sharing stories and raising awareness, we inspire hope, amplify voices, and create a future where everyone with PWS has the opportunity to live life full.
Raise awareness with us! Learn how you can get involved during PWS Awareness Month!
