Four-year-old Penelope may not be like anyone in the entire world. That’s why she’s developing her super powers in her own unique way.
Penelope is often connected with the code 10q23.31-24.2. It’s a fancy way of saying she has a rare genetic disorder – she’s missing part of her tenth chromosome to be exact. It’s such a rare condition that it doesn’t even have a name.
Parts of her brain are underdeveloped which has led to learning disabilities and developmental disabilities, including her speech. For a long time, Penelope couldn’t say a word.
It was heart-breaking for her mom, Julie, to watch people ask Penelope her name and see her look up in silence with a frustrated expression.
“We had days with hours of crying because she couldn’t tell us what she wanted or what she needed,” says Julie. “I would have done anything to fix whatever was wrong, but I just didn’t know. I felt so helpless.”
Holland Bloorview’s Speech Language Pathology program helped them both break the silence.
The Speech Language Pathology team includes speech language pathologists and communicative disorders assistants who work with kids and youth to address needs that may impact speech, communication, language, swallowing, as well as the need for alternative communication (like communication devices).
Penelope has worked with her Holland Bloorview speech-language pathologists for the past four years. First, she started making sounds. Then words. When she first started saying “mama” and “dada” Julie’s eyes teared up. Now, Penelope is speaking in short sentences and asking questions!
Julie’s favourite is when she comes home and Penelope smiles and asks, “How was work, Mommy?”
“She’s so happy and confident now,” says Julie. “Holland Bloorview has helped Penelope find her voice and it has literally changed our lives. Her voice is the most beautiful sound I’ve ever heard.”