08/02/2026
Meet Oaklynn. 💛🦋
Oaklynn is a 3-year-old little girl from Wabamun, Alberta. She loves butterflies, puddle jumping, gardening, dress-up, animals, and finding magic in the little things. She is funny, compassionate, determined, and has a smile that can light up an entire room.
In January 2026, Oaklynn was diagnosed with Parry-Romberg Syndrome, an extremely rare disease that causes progressive tissue loss. In Oaklynn's case, the disease is affecting her face and has been aggressive enough to require powerful medications, IV steroid infusions, weekly chemotherapy injections, regular MRIs, and ongoing monitoring by specialists.
What many people don't see is the toll that comes with that.
They don't see the pain.
They don't see the nausea, headaches, fatigue, hair loss, mouth sores, and other side effects that come from the medications used to try to stop the disease.
They don't see the tears on injection nights.
They don't see the fear that comes with every new symptom, every new appointment, and every MRI.
And they don't see a mother lying awake at night wondering what tomorrow will bring.
Parry-Romberg Syndrome is rare, and because it is rare, there are still so many unknowns. There is no cure. There is no guarantee. There is only treatment, hope, and the determination to give Oaklynn the best chance possible.
No child should have to endure the pain, treatments, and uncertainty that come with a disease like this.
Yet every day, Oaklynn faces it with a courage that amazes us.
These photographs capture the little girl behind the diagnosis.
The little girl who still chases butterflies.
Who still splashes in puddles.
Who still laughs, dreams, and imagines a world full of adventure.
Our hope in sharing Oaklynn's story is to raise awareness for Parry-Romberg Syndrome and other rare diseases, advocate for better support for families, and remind others walking a similar path that they are not alone.
Because behind every diagnosis is a child.
And behind this diagnosis is Oaklynn. 💛🦋
Please Share Oaklynn's story
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