Stories from the
BREATHE Community

The story of Freya's beginning, before the diagnosis of Prader-Willi Syndrome, and how she was named. If you are the parent of a child with a disability or special needs, you may be able to relate to the fear that plagues us in the beginning (before we round those sharp edges of anxiety to common, every day worries).

My daughter and her class are hiking to the top of a 10,000 ft volcano. This is just one of the adventures on a 5 day camping trip. My daughter has Prader-Willi Syndrome, which brings with it a variety of challenges like hypotonia and daytime sleepiness. Here are some ways I am preparing for this trip.

Freya is 11 years old now. Reading this past blog entry from when she was 4 months old brought so many sweet memories, absent of any grief I felt at the time. I am sharing this here for the new parents, to remind you there is sweetness in the small things, beauty and hope in the details, in celebration of how far Freya has come, and the recognition that it is possible, at times, to move through fear and sadness to a happier, brighter place.

Freya is 11 years old now. Reading this past blog entry from when she was 4 months old brought so many sweet memories, absent of any grief I felt at the time. I am sharing this here for the new parents, to remind you there is sweetness in the small things, beauty and hope in the details, in celebration of how far Freya has come, and the recognition that it is possible, at times, to move through fear and sadness to a happier, brighter place.

When Freya was first diagnosed, I started a blog called "Growing Up with PWS". One of the first posts was about the surrendering that came with the diagnosis. 11 years later I am sharing this post again, but with a new ending.

Kintsugi is a Japanese art form using gold, silver or bronze to join broken pieces of pottery. It treats the breakage and repair as part of the history of an object, rather than something to disguise. This is the first of many poems the author has written about her experience as the mother to a daughter with special needs.

Some words from an experience Grandma. Anne sent her Mom some questions about being the grandmother to a child with a disability and here is what she had to say.

Someone asked me how we meet the needs of Freya's little sister, how much we have told her about Prader-Willi syndrome, and when we started talking with her about it. Here is my reply.

Here are 10 simple ways to eat healthier as a family.

Raising a child with special needs or a disability can be very isolating. As parents, it is important that we know how to reach out to each other when needed. This is why the BREATHE community was created.