Four-month-old Lily Frittenburg is getting a lot of attention at the IWK.
She was born with an extremely rare skin disorder known as Incontinentia Pigmenti, or IP.
The condition causes painful blisters on her arms and legs but can also affect her eyes, teeth and her brain among other things.
We met Lily and her parents at the Perinatal Follow up clinic recently, where several caregivers were lined up to see Lily for the first time.
Here’s what that sounded like:
You heard Lily’s Dad, Andy, mention they’ll be back for eye tests on the 19th – we’re hoping to see the Frittenburgs on Friday to find out how that went.
We also heard Dr. Stinston in that piece mention that Lily’s skin condition is a lifelong condition. That means that while Lily has just started her IWK journey, she will be visiting specialists here for the next 18 years!
If you become an IWK Superstar today, you are helping to support Lily, and hundreds of children like her, who will require highly specialized care over a longer period of time.
Please make that call and provide the ongoing support the IWK depends on.
1 comment:
Thank you for doing the story about Lily it was wonderfull brought tears to our eyes.
lily's mom and dad and her brothers
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