Our daughter Oaklynn has been diagnosed with Parry-Romberg syndrome, a rare and progressive autoimmune condition that causes deterioration of the tissues on one side of the face. It can affect the skin, fat, muscle, and bone, and in severe cases may also impact neurological function.

In Oaklynn’s case, the disease is extremely active and aggressive.

Her medical team has made it clear that immediate intervention is critical to try to slow the progression and protect her long-term health and development. Delaying treatment is not an option.

Beginning this week, she will undergo IV methylprednisolone infusions three days a week once a month, at the Stollery Children’s Hospital. These high-dose steroid infusions are necessary to calm her immune system and attempt to halt the rapid progression of the disease.

We are moving quickly because we have to.

While we are grateful for the care she is receiving, not all of her medications are fully covered. In addition to uncovered medical costs, we are facing:

• Transportation to Edmonton three times per week

• Hospital parking fees

• Childcare for our other children during infusion days

• Missed work hours to ensure she never misses treatment

With treatments starting immediately, these expenses are hitting all at once.

As parents, our only focus is making sure Oaklynn gets every chance at stability and protection from further progression. Asking for help is not easy, but right now we urgently need support so that financial strain does not interfere with her care.

If you are able to donate, we are deeply grateful. If you cannot, sharing her story helps more than you know.

We are fighting hard for our little girl — and we won’t stop.

Thank you for standing with Oaklynn.

— Skyy & Family