Please Help MacKenzie Get Her Voice
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Above is a video of Mackenzies FIRST time using a tobii communication device. This was her trial to see how well she could use it, as you can see she rocked it and has only improved since then!
Meet Mackenzie. Mackenzie is 11 years old. She has Rett syndrome. A neurological disorder that affects mainly girls due to a mutation or deletion of the mecp2 protein on the X chromosome. As a result, Mackenzie can't walk, can't talk, has difficulty controlling movement , especially her hands, she is tube fed, has seizures, scoliosis, severe asthma and breathing problems.
For most of mackenzies life she has been pretty healthy considering her diagnosis, until her scoliosis started getting more severe about a year ago. Since then Mackenzie has had a harder time getting over colds and flus, and spent a total of three weeks in the hospital since October 2014. She was scheduled for surgery in November 2014 but wasn't healthy enough for surgery at the time since her scoliosis was making it difficult to recover when she got sick. After all of the hospital visits, she finally stayed healthy enough to have her life saving surgery.
Due to the severity of mackenzies condition , she will need a new wheelchair accessible van. with the van she has now, two people have to lift her out of her wheelchair and transfer her to a special car seat that sits on a special van seat which turns, comes out of the van and lowers, however she is now too tall for this car seat and the transfer is painful for her. She would greatly benefit from being able to stay in her wheelchair when travelling in the van. She had spinal fusion on March 2 2015 from t2 to her pelvis, meaning she has metal rods that hold her spine as straight as possible from the top of her spine all the way to her pelvis. As a result, she cannot bend or twist in the upper body and this is why it is extremely important that she has a van where she can stay in her wheelchair. A wheelchair accessible van could cost anywhere between $30000-$50000.
Since Mackenzie is unable to talk and can't control her hands to touch a symbol to communicate, she needs a tobii communication device, which is like a computer screen that uses a camera to track her eye movement, so if she looks at a symbol it's as though she touched it! Having this device would allow her to communicate if something is wrong if she doesn't feel well, or anything she may want to say. This device costs over $15000
Please help Mackenzie fight against Rett syndrome and give her a voice! Thank you for your support!
Meet Mackenzie. Mackenzie is 11 years old. She has Rett syndrome. A neurological disorder that affects mainly girls due to a mutation or deletion of the mecp2 protein on the X chromosome. As a result, Mackenzie can't walk, can't talk, has difficulty controlling movement , especially her hands, she is tube fed, has seizures, scoliosis, severe asthma and breathing problems.
For most of mackenzies life she has been pretty healthy considering her diagnosis, until her scoliosis started getting more severe about a year ago. Since then Mackenzie has had a harder time getting over colds and flus, and spent a total of three weeks in the hospital since October 2014. She was scheduled for surgery in November 2014 but wasn't healthy enough for surgery at the time since her scoliosis was making it difficult to recover when she got sick. After all of the hospital visits, she finally stayed healthy enough to have her life saving surgery.
Due to the severity of mackenzies condition , she will need a new wheelchair accessible van. with the van she has now, two people have to lift her out of her wheelchair and transfer her to a special car seat that sits on a special van seat which turns, comes out of the van and lowers, however she is now too tall for this car seat and the transfer is painful for her. She would greatly benefit from being able to stay in her wheelchair when travelling in the van. She had spinal fusion on March 2 2015 from t2 to her pelvis, meaning she has metal rods that hold her spine as straight as possible from the top of her spine all the way to her pelvis. As a result, she cannot bend or twist in the upper body and this is why it is extremely important that she has a van where she can stay in her wheelchair. A wheelchair accessible van could cost anywhere between $30000-$50000.
Since Mackenzie is unable to talk and can't control her hands to touch a symbol to communicate, she needs a tobii communication device, which is like a computer screen that uses a camera to track her eye movement, so if she looks at a symbol it's as though she touched it! Having this device would allow her to communicate if something is wrong if she doesn't feel well, or anything she may want to say. This device costs over $15000
Please help Mackenzie fight against Rett syndrome and give her a voice! Thank you for your support!
Organizer
Lynda Henneberry
Organizer
Halifax, NS