60: Griffin: An Insider View of PWS

Back in Ep 48, I had a lovely conversation with Jessie, mom to 17-year-old Griffin with Prader-Willi Syndrome. Today, I get to offer you an interview with Griffin himself. Griffin is a great kid, living a beautiful life full of motivation and a desire to be helpful. He is an inspiring example of the hope and expanded expectations of what we can have for our children – but he has help, and he makes that clear. Part of his success is the assistance he receives in life, the support of his family and friends, the school, and the accountability that comes with this support. As many of you know, PWS is a spectrum disorder, which means that not all kids are capable of such things as Griffin. But the point is not to judge, not to base the success of your child on another – but hopefully, this interview offers you an insight into what all kids with PWS experience, whether they can hike for miles and speak at a conference in front of a large group of people, or whether a stroll around the block and a complete articulate sentence is their success – they all feel the hunger, they all deal with anxiety. This is the heartbreaking reality of PWS. But the beauty is, and this is what Griffin shows us, is that these can be managed. They do not have to deter your child from living their best life, however that looks for them. We can’t make these challenges go away, but with the right help, the right advocacy and understanding, we can help our children learn to live a full and beautiful life, one that they are inspired to live.