Thank you for visiting my page. Our Allie has Prader-Willi Syndrome (PWS) and we are taking one SMALL Step to help raise funds for critical research to help eliminate the challenges of PWS.
May is Prader- Willi Syndrome (PWS) Awareness Month. A syndrome that I had no idea existed until our Alexandra was diagnosed a few weeks after she was born.
PWS is a rare genetic disorder that affects approximately 1 in 15000. It is a life-threatening medical disorder caused by loss of active genetic material on chromosome 15.
PWS has many affects including muscle strength, behavior, pain tolerance, cognition and learning. However the main symptom is hyperphagia or continuous extreme hunger. A person with PWS never feels full. They also have a slow metabolism which results in easy weight gain. PWS is recognized as the leading genetic cause of life-threatening obesity in children.
What does PWS mean for our Allie? She is on a very strict diet. No sugar, low carbs and portion control. It’s a mother’s nature to feed their little one so it’s especially heartbreaking when she wants more of something and I have to say no. Allie is on Growth Hormone (GH) Therapy. We give her daily GH injections. This therapy helps her to grow and develop muscle rather than fat. Her weight and overall growth is monitored closely by her endocrinologist which means numerous doctor appointments. She is also in Speech, Physical and Occupational Therapy to help with her overall development.
Allie is doing well; she loves to sing and dance, she loves giving hugs and loves going outside. I’m still waiting to hear her say “mama” but thanks to daddy she has learned to say “touchdown” ahead of the NFL season. She is a happy, funny and full of smiles! She brings so much joy to our family. I’ll say it over and over again – she is pure joy!
We would love for you to join us on Sunday, May 27 at Chinguacousy Park in Brampton, ON and walk with our family. If you can't make it, please consider donating to our family page. Thank you for your continued support and love.
Funds raised will be used to advance PWS research through the Foundation for Prader-Willi Research Canada. You can learn more about PWS and the research that is underway at http://www.fpwr.ca/research/.
You can help by joining our team or making a donation now!
Mike, Lisa and Allie