Sofia's Voice
Donation protected
Please see August 2018’s update under “Updates” of this campaign.
Sofia's Story:
Sofia, April 13th 2014 ~ A day we’ll never forget. The day we brought our first born into this world. I remember looking at her and thinking ~ the things she’ll do, the places she’ll go, the friends that will come and go, and what her passion will one day be. I wasn’t sure I was ready for my child to conquer this crazy chaotic world, like I wanted to carry her in Utero, a place I knew she’d be warm & safe forever. What I didn’t realize was, a short time later I would be able to add to my thoughts - be free of her disability.
Sofia grew and flourished, slowly but surely. Sofia’s fine motor skills were advanced, she was always excellent using her hands from an early age - fed herself, held her bottle, picked her toys up, put her hands together, and could control her hand movements. As the months went on, we questioned whether Sofia’s gross motor skills were delayed. She hadn’t progressed to crawl, stand, pull herself up to things or walk.
Why wasn’t she meeting these milestones?
Between the ages of 15 – 27 months Sofia went through multiple invasive tests before we received her diagnosis: Rett Syndrome, a rare neurological disorder. Girls like Sofia experience lifelong impairments such as, loss of speech, seizures, scoliosis, and trouble breathing to name a few. Many girls never walk or will lose the ability. Sofia will require constant care.
Today: Sofia is not mobile, non verbal, and as of June 2016, lost all of her fine motor skills: purposeful hand movements. She’s developed an almost constant hand-to-mouth gesture. She cannot feed or dress herself.
Tobii Device: Sofia's ONLY method of communicating with us is Eye Gaze. The Tobii Dynavox is a speech generating device. It can be controlled via touch, swithces or through gaze interaction via an optional built-in eye tracker. For individuals with Cerebral Palsy, Rett Syndrome, ALS or Stroke/Aphasia, who rely on augmentative and alternative communication to make their voices heard, the Tobii Dynavox I-15+ allows for a more independent and integrated life. We're currently on a waiting list for a Tobii Device trial. We feel as though were racing against the clock. Any skills Sofia has currently she could lose at any given time. Getting the Tobii Device now is crucial.
Information on Rett Syndrome: Rett Syndrome, is a unique developmental disorder found on the X Chromosome. A mutation of MEPC2, which begins to show its effects in infancy or early childhood. It's seen almost exclusively in girls, although it can occur rarely in boys. The prevalence rate in various countries is from 1:10,000 to 1: 23,000 live female births.
The MECP2 protein can be found in all cells of the body, but it's most prevalent in the brain. Rett Syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include, learning, speech, sensory, sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
Sofia's future is very unknown at this time.
Please LIKE "Sofia's Voice" on Facebook to stay informed throughout Sofia's journey. (Rett Syndrome FAQ/More information can be found in the Photo section of "Sofia's Voice").
How will these funds help?
~ Tobii Device
~ Home Accessibility Modifications
Ramp into home, widen doorways, accessible washroom, etc.
~ Special Equipment
~ Any other resources and/or equipment required for Sofia's day-to-day needs
The North Bay Nugget Article ~ 02/04/2017
http://www.nugget.ca/2017/02/04/three-year-old-daughter-diagnosed-with-rett-syndrome
CTV News Story ~ 04/07/2017
http://northernontario.ctvnews.ca/video?clipId=1052221
To learn more about Rett Syndrome visit: www.rett.ca
Sofia's Story:
Sofia, April 13th 2014 ~ A day we’ll never forget. The day we brought our first born into this world. I remember looking at her and thinking ~ the things she’ll do, the places she’ll go, the friends that will come and go, and what her passion will one day be. I wasn’t sure I was ready for my child to conquer this crazy chaotic world, like I wanted to carry her in Utero, a place I knew she’d be warm & safe forever. What I didn’t realize was, a short time later I would be able to add to my thoughts - be free of her disability.
Sofia grew and flourished, slowly but surely. Sofia’s fine motor skills were advanced, she was always excellent using her hands from an early age - fed herself, held her bottle, picked her toys up, put her hands together, and could control her hand movements. As the months went on, we questioned whether Sofia’s gross motor skills were delayed. She hadn’t progressed to crawl, stand, pull herself up to things or walk.
Why wasn’t she meeting these milestones?
Between the ages of 15 – 27 months Sofia went through multiple invasive tests before we received her diagnosis: Rett Syndrome, a rare neurological disorder. Girls like Sofia experience lifelong impairments such as, loss of speech, seizures, scoliosis, and trouble breathing to name a few. Many girls never walk or will lose the ability. Sofia will require constant care.
Today: Sofia is not mobile, non verbal, and as of June 2016, lost all of her fine motor skills: purposeful hand movements. She’s developed an almost constant hand-to-mouth gesture. She cannot feed or dress herself.
Tobii Device: Sofia's ONLY method of communicating with us is Eye Gaze. The Tobii Dynavox is a speech generating device. It can be controlled via touch, swithces or through gaze interaction via an optional built-in eye tracker. For individuals with Cerebral Palsy, Rett Syndrome, ALS or Stroke/Aphasia, who rely on augmentative and alternative communication to make their voices heard, the Tobii Dynavox I-15+ allows for a more independent and integrated life. We're currently on a waiting list for a Tobii Device trial. We feel as though were racing against the clock. Any skills Sofia has currently she could lose at any given time. Getting the Tobii Device now is crucial.
Information on Rett Syndrome: Rett Syndrome, is a unique developmental disorder found on the X Chromosome. A mutation of MEPC2, which begins to show its effects in infancy or early childhood. It's seen almost exclusively in girls, although it can occur rarely in boys. The prevalence rate in various countries is from 1:10,000 to 1: 23,000 live female births.
The MECP2 protein can be found in all cells of the body, but it's most prevalent in the brain. Rett Syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include, learning, speech, sensory, sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
Sofia's future is very unknown at this time.
Please LIKE "Sofia's Voice" on Facebook to stay informed throughout Sofia's journey. (Rett Syndrome FAQ/More information can be found in the Photo section of "Sofia's Voice").
How will these funds help?
~ Tobii Device
~ Home Accessibility Modifications
Ramp into home, widen doorways, accessible washroom, etc.
~ Special Equipment
~ Any other resources and/or equipment required for Sofia's day-to-day needs
The North Bay Nugget Article ~ 02/04/2017
http://www.nugget.ca/2017/02/04/three-year-old-daughter-diagnosed-with-rett-syndrome
CTV News Story ~ 04/07/2017
http://northernontario.ctvnews.ca/video?clipId=1052221
To learn more about Rett Syndrome visit: www.rett.ca
Organizer
Jordan Lepkan
Organizer
North Bay, ON
