Social Distancing: Joella’s Story

This guest blog post was written by Janette Migliori, mother of Joella, a Penn State Children’s Hospital patient.

Three years after the hardest 6 months of our life, all the stress and anxiety is back. Will my child make it? Is my family strong enough this time? Can we do this again? I thought the last time we were done with the hardest part and the learning to live with our new normal idea of what family will be for us was done. Now with COVID-19 all these feelings and questions are coming back.

My daughter was born with a rare genetic syndrome called VACTERAL Association that caused multiple serious congenital health issues to be present at once. She went through 15 surgeries to save her life before she was 6 months old, including open heart surgery at 16 weeks. Multiple times we thought we would be leaving the hospital alone and planning a funeral. But the amazing doctors, surgeons and all the staff at the Penn State Children’s Hospital stopped that from happening. But now those fears are back because all that she has gone through means she has a weak immune system and compromised lungs and would not survive this virus.

How can I protect her this time? By staying home and ordering my groceries for contactless pick-up and taking the time to Clorox every item before it comes in my house.  By not letting her see her friends for a playdate and trying explaining to a 4-year-old why they can’t meet at the park to play and hold her as she cries. I have to watch as months of therapy slowly regress because it is difficult for me to be a Special Education teacher, Speech Therapist, Physical Therapist and a Teacher for the Visually Impaired and still be Mom while caring for her medical needs. Please help Joella and kids like her and stay home so they can continue to have the gift of growing up. Please help them by flattening the curve!

Meet Joella: