Help Give Mackenzie a VOICE

Mackenzie came into the world in the early afternoon of December 16, 2017 and, instantly, our lives were forever changed.  She was a happy baby who loved going on long stroller walks, floating in the swimming pool and riding her toy bus.  For the first 15 months of her life, Mackenzie developed as expected.  She rolled over, sat up and began to army crawl. She fed herself meals, loved spending time with kids or adults and began to say a few words.  However, as summer 2019 approached, we became increasingly worried about her development as she was still unable to balance or walk, she stopped crawling, she couldn’t use her hands effectively to feed herself and she was no longer speaking the few words she had.  Trying to find answers, we made appointments with our family doctor, a pediatrician, a physiotherapist and a neurologist.  There were countless sleepless nights, ongoing tests, unanswered questions and hours of appointments. We could never have imagined what would happen next. 

On August 19, 2019 our lives were, again, forever changed. A blood test came back diagnosing Mackenzie with Rett Syndrome – a rare genetic neurological and developmental disorder that affects the way that the brain develops, causing a progressive loss of motor skills and speech.  This rare,  not inherited neurological syndrome affects only 1/10 000 girls (which is less than a 1% chance of having a child with Rett Syndrome). Being told your daughter may never walk, talk or feed herself is completely devastating, especially since she is still the beautiful, happy girl that we have always known.  She uses her bright blue eyes and ear-to-ear smile to lighten up any room.

In the weeks since the diagnosis, we are still processing what our new life will be like.  There is currently no cure for Rett Syndrome and it affects each child differently so the future is uncertain, but we must be hopeful.  Mackenzie is currently attending private, highly specialized physiotherapy in Toronto once a week as we are optimistic that she will one day be able to walk.  Additionally, she attends weekly private occupational therapy to develop her fine motor skills so she can hopefully use her hands effectively and feed herself again. These sessions of private physiotherapy and occupational therapy cost $150/hour.  Similar to other girls with Rett Syndrome, Mackenzie has lost the ability to speak and relies on her limited non-verbal communication to express her needs.  Understandably, this is very frustrating for her as she is not able to tell us what is on her mind. We know that her sweet little voice is trapped in her body and can't be expressed verbally.  Mackenzie's ability to talk has been taken from us too soon and we sure didn't get to hear words that every parent wants to listen to. This is where we could use your help...

PLEASE HELP GIVE MACKENZIE A VOICE.

We are optimistic that, given the right tools, such as a Tobii, Mackenzie will be able to communicate.  The Tobii is a computerized device which uses eye gaze technology for a person to express her needs and wants while communicating with her eyes.  Mackenzie’s eyes will act as a computer mouse and she will learn that her ‘voice’ can be heard by moving her eyes over pictures/symbols/words on screen, which are then read out by the computer.  We are currently trialling a Tobii device from the company, Tobii Dynavox.  The cost of the device, required software and physical equipment is over $20 000.


Raising a child with special needs is physically, emotionally, mentally and financially straining.  We are partnering with ErinoakKids to access supports for Mackenzie and are happy to share that she also receives assistance at daycare.  Mackenzie will continue to receive the best care we can provide, although most of these services are not covered by OHIP.  We could really use your financial support to help offset the cost of the Tobii.  This will allow us to keep focused on her physical therapies while also developing her communication skills.  We know that this is going to be a long road as we teach her to find her ‘voice’, communicate her thoughts and use the Tobii, but we are not going to give up.  We will share our progress with the Tobii by posting updates so we can celebrate together.

We love Mackenzie more than ever and want to give her every advantage possible in this world.  We are so grateful for the kind words, love and support you have given our family since we received the devastating news.  We couldn’t navigate through this difficult, life-changing diagnosis without our family and friends. We know that the future is still unknown but the love and support from our family, friends and the Rett Community has helped us know that we are not alone in this journey.  Love to you all​.

#ReverseRett #CureRett #ThisisRett #RettSyndrome #SheCan #UntilSheCan #Rettawareness