Byra family on Monday, October 28, 2013. Both children in the family are afflicted with severe medical conditions. Parents Bill and Allison Byra have lived the fears that all parents dread.
Bella, currently age 8, suffered a severe hemorrhagic stroke at the age of 2 ½. This was the result of an arteriovenous malformation deep in her cerebellum. She was born with this malformation. Surgery successfully repaired the defect, however, the resulting stoke did leave Bella with a critical brain injury and she is disabled. She is currently confined to a wheelchair and fighting to make small gains in her speech and motor skills.
Liam was born just one day after Bella came home from major brain surgery. He was born with a under-developed ear and mandible, unknown to anyone prior to his birth. His eventual diagnosis was Goldenhar syndrome, which is a rare congenital defect characterized by incomplete development of the ear, nose, soft palate, lip, and mandible. In 2010, at the age of 2, it was determined that he had a tumor on his brain stem. This tumor was partially removed, but due to its location it could not be completely removed. Liam is currently in physical therapy, and has lasting effects from the brain tumor. He will require many surgeries in the future to repair his facial malformations. Brain surgery has left Liam with permanent right side weakness. His tumor is constantly monitored for growth and the hope is that it does not increase in size.
To help complete makeovers, Special Spaces Chicagoland depends on donations from local businesses, groups and even other foundations. Bella and Liam’s room makeover funding has been provided by local donors, Helping Hands Therapy of New Lenox and the Coldwell Banker Chicagoland Foundation.
Naperville resident Kelly Knox founded the Special Spaces Chicagoland chapter in 2012. Several ill children have gotten room makeovers this year and Knox has many more children waiting. The organization’
The Chicagoland chapter has several other room makeovers scheduled for children in need. Follow the progress on Facebook at “Special Spaces Chicagoland”
Special Spaces National was founded in July 2004 on the precedent that children battling life-threatening illnesses need their own special space. This is a place of hope, inspiration and a special space to find peace and comfort. A Special Spaces, a 501 C (3) non-profit, has created hundreds of bedrooms across the country. It is the vision of our organization to have a Special Spaces Director everywhere there is a child in need.