“She is my angel, my special girl… We have a deep bond and always have,” says Joan, also known as Nanny by her granddaughter, Reilly. “I was there the day she was born… and when she got sick.”
At three months, Reilly developed flu-like symptoms and was rushed to SickKids in Toronto. Where she was diagnosed with Pneumococcal Meningitis, a bacterial form of meningitis, a serious infection of the thin lining that surrounds the brain and spinal cord. Just a few weeks after Reilly became sick, the vaccine for meningitis was approved in Canada.
As a result, Reilly sustained significant losses, including profound hearing and vision loss. Deafblindness is a combination of hearing and vision loss that is unique to each person. It can impact access to information, communication, and mobility.
At seven months, Reilly was one of the youngest in North America to receive a cochlear implant, a small electronic device that stimulates the cochlear nerve, used for hearing. However, being so young, it was challenging to keep the external part of the implant on Reilly’s head. “She would roll around and the external piece would pop off, or she would pull it off… We tried everything including using headbands or scarves to fix it to her head. It was a battle,” says Joan.
Reilly was two when the family discovered that she has some vision. “Her Papa brought home some LED lights; when we plugged them in, Reilly began to move towards the light.”
Affectionately referred to as ‘Smiley Reilly’, Joan notes that Reilly is the happiest person in spite of everything she has overcome. “Reilly welcomes all with a beautiful smile, she is very affectionate, expressive, and she loves hugs.”
Hugs are very important to Reilly, as she communicates through the sense of touch. Intervenors are professionally trained to act as the “eyes” and “ears” of the individual with deafblindness through the sense of touch.
Reilly first received Intervenor Services when she was five at W. Ross Macdonald School for the Blind. “After Reilly got sick, her Papa, Mother, and I wanted to ensure she had the best quality of life and care; as she will need this support to live as independently as possible,” says Joan.
Reilly attended W. Ross Macdonald for 15 years and moved to one of DeafBlind Ontario Services’ locations in Innisfil last October. “We are relieved to have found another loving home for Reilly. It puts the entire family at ease that her life will continue to be enriched.”
“Reilly’s move to her new home was a seamless transition. She fit right in with our team of intervenors. It feels like Reilly always belonged here… Her happy soul lights up everyone around her and you can’t help but giggle when she giggles. Reilly has brought unexpected light to everyone at our location in Innisfil during a difficult time with the pandemic,” says Tellie, an intervenor at DeafBlind Ontario Services.
DeafBlind Ontario Services is committed to providing a high quality of life for people with deafblindness, this commitment is ingrained in their values.
“Every small leap and bound gives our family hope for a better quality of life and future for Reilly,” says Joan.