Remembering Rianne: You Are Not Alone

Unfortunately, our beautiful Rianne passed away just six weeks before her 18th birthday.

When I look back on our journey, a moment that stands out to me was finally getting a diagnosis. Our hospital wouldn’t refer us to anyone else, so I had to go behind their back to get the answers we needed. It was a challenge, but getting that diagnosis was a win that gave us clarity.

Finding the Freya Foundation and the PDH community has been a comfort. It’s so nice to have people who are going through the same things as you. If I could offer a word of comfort to a newly diagnosed family at the start of their PDH journey, it would simply be this: you are not alone, even though you feel you are.