A special contribution by guest blogger Anne Fricke
When Freya was little, her parents weren’t sure what her future would hold. At two and a half, she was still not walking well, and every milestone felt like a mountain to climb. Today, at almost five years old, Freya is a whirlwind of movement and joy. “She runs, jumps, goes for long walks, bounces like crazy on the trampoline, and does great in her dance classes,” her mom shared proudly.
Freya’s growth isn’t just physical — her communication has blossomed, too. “She’s coming into the world of conversations,” her mom said. “Her sentences are getting longer, strangers can often understand her, and she loves to sing and recite simple poetry.”
Her progress extends beyond words and movement. Freya has developed an impressive sense of self-control and awareness. “Though we’ve had issues with food that’s out on the table or counter, we’ve never had to lock anything,” her mom explained. “I’ve even seen her turn down candy because she knew it wasn’t good for her — and she didn’t know I was watching.”
Freya’s gentle, magnetic personality touches everyone she meets. “She’s such a magical, friendly person whose capacity to make people feel loved is inspirational,” her mom said. “I hear from so many friends, teachers, and therapists that they adore her because of her friendly, engaging, open, loving nature.”
Raising a child with PWS has been a journey of resilience for Freya’s family. “The whole experience has shown me the strength, determination, love, and acceptance that I and my family have,” her mom reflected. “From the unexpected cesarean, to caring for a fragile, lethargic baby, to giving my first-ever injection to my 11-month-old — it’s been a challenge, but one we’ve met with love and determination.”
When asked what she would say to a parent whose child has just been diagnosed with PWS, her message is simple and powerful: “There is help and there is hope. The future for our kids is changing for the better.”
That hope is sustained by a strong community of support. “We have a fabulous community of family and friends who’ve been crucial in helping us navigate these past few years,” she said. “And I would not feel nearly as hopeful as I do without the advice and encouragement of Dr. Jennifer Miller. Her knowledge of PWS — and the love and hope she brings to every child and family — is incredibly comforting and inspiring.”
Freya’s story is one of perseverance, love, and light — a reminder of how far hope and determination can carry a family, and how deeply one little girl can touch the hearts of everyone around her.
Anne has also written the following poem, which she often shares with other parents:
Kintsugi / Gold Joining
Kintsugi is a Japanese art form using gold, silver or bronze to join broken pieces of pottery; treats breakage and repair as part of the history of an object, rather than something to disguise
Like veterans home from a brutal war we seek each other out
because ours is a truth that few understand;
what it feels like to hear that your child is broken,
to hold them and feel a life force so weak you fear their death,
to sit in a sterilized room with a stranger telling you who your child will be
based on one tiny, miniscule deletion of their DNA
and then to be cast adrift on a turbulent sea of doubt and fear and know that
you must hoist the sails and guide this vessel home despite your ignorance
of the prevailing winds
We have lived through the battle
of having our child’s future shattered in that one blazing moment of diagnosis
our shock-filled eyes slowly registering the shimmering glass-like fragments
scattered about our feet,
tears mixing with blood seeping from wounds suffered in the explosion,
wounds becoming scars, there to remind us always of this moment.
And we have lived through the aftermath,
the dawning realization of the destruction at our feet,
the undeniable knowledge that it is now our job to pick up the pieces
one-by-one,
fit them imperfectly back together
bind them with gold and glue,
determination,
tears and small triumphs,
so that our child’s future may now be a work of art,
a sculpture of love to show them they have a place in this world.
As my daughter and I walk these halls in the
myriad of doctors and specialists, I see the new
parents with their babies,
the shock, the sorrow, the worry etched deep
into the lines of their faces
as we step carefully amongst
the broken shards of their child’s future.
I want to tell them of my daughter,
and her life,
the way the sunlight is refracted so beautifully
off the broken pieces we have
bound together.
But there are few words to cut through the
anxiety and grief,
few words that do not sound empty;
So instead I smile and let my soulful daughter go to them
and look upon their baby with the sincere, open delight
that brings people to love her so easily,
I smile and hope they see what I see,
the beauty of the perfect imperfections of
someone who was never, never truly broken.
