Now as many of you know Freya has Prader-Willi Syndrome. I recently spoke with a new friend from Vermont, Jessie, who is also raising a child with PWS. Her son Griffin is 17 years old and I am inspired and intrigued by his story. From very early on, Jessie says, they learned to treat the Griffin Syndrome, rather than dive into all of the possibilities and potentials of PWS. They looked at the child himself and managed what came up for him personally. Today Griffin is a motivated and confident young man who is in tune with himself and able to advocate for his own needs. This does not mean it has been an easy road for Jessie, for Griffin or their family, but that they have found a way to live a good and full life with PWS. And the future for Griffin is wide open.
I hope you all have a lovely Halloween time – I know for many of our kids in particular, whether with PWS or Autism Spectrum Disorder, kids with special mobility issues or with diabetes - the gamut - this can be an incredibly difficult time of year for all. Good luck to all of you out there. Stay safe, and stay sane.
I hope you find this interview engaging and inspiring.
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