Help Give Olivia Quinlan/Hensen a VOICE!
Donation protected
Olivia Grace was born late on August 22, 2016 a strong and healthy baby girl. She loved her bath time, Moana, swimming, and cuddles with her family. She appeared to be developing normally, starting to speak with a couple words and even starting to feed herself. At around 10 months of age, we became increasingly concerned that Olivia was falling behind on some milestones, like crawling, and we noticed that some of her newer skills were inconsistent. We sought medical advice and were reassured, time and time again, that she was still within the normal timeframe of beginning to learn some of those milestones.
We began requesting tests and meetings with pediatric, developmental, and neurological specialists when we noticed Olivia had progressively greater difficulty sitting up without support. After numerous tests, unanswered questions, lost milestones, and months of worrying we were told Olivia likely had Rett Syndrome. It would take over seven more months before Olivia received a confirmed diagnosis of Rett Syndrome.
Rett Syndrome is an insidious genetic disorder (not inherited) caused by a random mutation of the X chromosome - MECP2 gene. The disorder causes rapid developmental regression in girls (rarely are boys able to survive long after birth) which can rob them of speech, fine motor skills, purposeful use of their hands, and the ability to walk. Unfortunately Olivia does have many other struggles including night terrors, seizures, night shaking episodes, repetitive hand to mouth motions, poor muscle tone, inability to stand on her own, and inability to walk. It may also lead to scoliosis, breathing difficulties, feeding problems, arrhythmia, and a host of other symptoms as these brave girls progress through life. To put it simply, Olivia’s capable brain is trapped in a body that she cannot control nor command. Imagine how frustrating that is? Not being able to tell others what you want or need… that you’re itchy or bothered by a noise or that your socks are not fitting correctly on your feet.
So this is where you come in…PLEASE help us give Olivia a voice!
We know that with the right supports/tools, such as the Tobii for example, Olivia will be able to communicate. The Tobii is a computerized device which uses eye gaze technology for Olivia to express her needs and wants while communicating with her eyes. Basically, Olivia’s eyes will act as a computer mouse and she is already learning 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 have been training Olivia with pictures/images/signs to prepare her for using eye gazing technology. In less than two training sessions Olivia has been able to use eye gaze technology to put together sentences (like letting her Mom know that she did not like her stopping story time, part way through). The cost of eye gaze devices, like the Tobii, plus their required software and physical equipment ranges from $20,000 to $30,000.
We so desperately want to hear sweet Olivia’s voice again. We want to see her ask for things she enjoys and be able to tell us where she is feeling pain so we can ease her pain. Olivia will be turning 4 years old in 2020 and we have yet to hear her say she loves us. Rett syndrome is a daily battle and a lifetime challenge but we know that Olivia’s quality of life will be greatly improved with the right therapies and tools.
Raising a child with special needs is physically, emotionally, mentally and financially straining. As much as we appreciate the therapeutic supports we receive for a few hours each month from the Thames Valley Children’s Centre, there is much time in between where Olivia relies upon us her parents to provide her with speech language, physiotherapy, and occupational therapy services. This is another reason we are seeking your support, as we are hoping to provide Olivia with additional professional therapy services so that she can continue to receive the best care we can provide.
We could really use your financial support to help offset the cost of the Tobii and additional medical services/devices and therapies that Olivia requires (such as specialized physiotherapy, medications, leg and arm braces, a mechanical lift, home modifications for wheelchair accessibility, etc.). 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 eye gaze technology, but we are not going to give up. We hope to share Olivia’s progress with a computerized eye gaze device by posting updates so we can celebrate together.
We want to thank the Sillito, Hensen and Quinlan immediate families for their support so far with Olivia's medical needs but her daily needs are ongoing and becoming increasing complex.
We are sincerely grateful for any support you can provide! Love to you all,
Darryl, Amber, and Olivia Quinlan
Rett Syndrome has taken so much away from Olivia and her family, yet she still seems to remain so happy. The Quinlan's are thankful for all the positive attributes that Olivia still maintains in her current health situation, but are weary of what the future might bring. Darryl and Amber struggle daily with the thought of all of the things that Olivia will never get to experience such as her own artwork hung on the fridge, sleep overs, or riding her own bicycle. Someone will always have to bathe Olivia, feed Olivia, dress Olivia, and through it all, she will not be able to speak to tell any of her caregivers what she wants or needs until she has her own voice. Darryl and Amber try their best to not let Olivia see their sadness and continue to pray for a cure. For now, all the family can do is try to provide everything that Olivia can utilize to make life with Rett Syndrome easier.
Angela Vaccaro
We began requesting tests and meetings with pediatric, developmental, and neurological specialists when we noticed Olivia had progressively greater difficulty sitting up without support. After numerous tests, unanswered questions, lost milestones, and months of worrying we were told Olivia likely had Rett Syndrome. It would take over seven more months before Olivia received a confirmed diagnosis of Rett Syndrome.
Rett Syndrome is an insidious genetic disorder (not inherited) caused by a random mutation of the X chromosome - MECP2 gene. The disorder causes rapid developmental regression in girls (rarely are boys able to survive long after birth) which can rob them of speech, fine motor skills, purposeful use of their hands, and the ability to walk. Unfortunately Olivia does have many other struggles including night terrors, seizures, night shaking episodes, repetitive hand to mouth motions, poor muscle tone, inability to stand on her own, and inability to walk. It may also lead to scoliosis, breathing difficulties, feeding problems, arrhythmia, and a host of other symptoms as these brave girls progress through life. To put it simply, Olivia’s capable brain is trapped in a body that she cannot control nor command. Imagine how frustrating that is? Not being able to tell others what you want or need… that you’re itchy or bothered by a noise or that your socks are not fitting correctly on your feet.
So this is where you come in…PLEASE help us give Olivia a voice!
We know that with the right supports/tools, such as the Tobii for example, Olivia will be able to communicate. The Tobii is a computerized device which uses eye gaze technology for Olivia to express her needs and wants while communicating with her eyes. Basically, Olivia’s eyes will act as a computer mouse and she is already learning 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 have been training Olivia with pictures/images/signs to prepare her for using eye gazing technology. In less than two training sessions Olivia has been able to use eye gaze technology to put together sentences (like letting her Mom know that she did not like her stopping story time, part way through). The cost of eye gaze devices, like the Tobii, plus their required software and physical equipment ranges from $20,000 to $30,000.
We so desperately want to hear sweet Olivia’s voice again. We want to see her ask for things she enjoys and be able to tell us where she is feeling pain so we can ease her pain. Olivia will be turning 4 years old in 2020 and we have yet to hear her say she loves us. Rett syndrome is a daily battle and a lifetime challenge but we know that Olivia’s quality of life will be greatly improved with the right therapies and tools.
Raising a child with special needs is physically, emotionally, mentally and financially straining. As much as we appreciate the therapeutic supports we receive for a few hours each month from the Thames Valley Children’s Centre, there is much time in between where Olivia relies upon us her parents to provide her with speech language, physiotherapy, and occupational therapy services. This is another reason we are seeking your support, as we are hoping to provide Olivia with additional professional therapy services so that she can continue to receive the best care we can provide.
We could really use your financial support to help offset the cost of the Tobii and additional medical services/devices and therapies that Olivia requires (such as specialized physiotherapy, medications, leg and arm braces, a mechanical lift, home modifications for wheelchair accessibility, etc.). 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 eye gaze technology, but we are not going to give up. We hope to share Olivia’s progress with a computerized eye gaze device by posting updates so we can celebrate together.
We want to thank the Sillito, Hensen and Quinlan immediate families for their support so far with Olivia's medical needs but her daily needs are ongoing and becoming increasing complex.
We are sincerely grateful for any support you can provide! Love to you all,
Darryl, Amber, and Olivia Quinlan
Rett Syndrome has taken so much away from Olivia and her family, yet she still seems to remain so happy. The Quinlan's are thankful for all the positive attributes that Olivia still maintains in her current health situation, but are weary of what the future might bring. Darryl and Amber struggle daily with the thought of all of the things that Olivia will never get to experience such as her own artwork hung on the fridge, sleep overs, or riding her own bicycle. Someone will always have to bathe Olivia, feed Olivia, dress Olivia, and through it all, she will not be able to speak to tell any of her caregivers what she wants or needs until she has her own voice. Darryl and Amber try their best to not let Olivia see their sadness and continue to pray for a cure. For now, all the family can do is try to provide everything that Olivia can utilize to make life with Rett Syndrome easier.
Angela Vaccaro
Organizer and beneficiary
Angela Vaccaro
Organizer
Port Dover, ON
Darryl Quinlan
Beneficiary