Kayla needs a "New Set of Wheels"
Donation protected
Kayla needs a “New Set of Wheels” with a ramp
This is not only for fundraising purposes, but also to share our journey and spread awareness of RETT SYNDROME. Please share our story with your family and friends.
We are raising funds for a handicapped accessible van to help us get Kayla out on more fun family outings and in a more safe and comfortable manner. This van would be a game changer for our family. She is getting so big and heavy that it’s becoming more difficult to lift her in and out of the car as well as her wheelchair in and out of the trunk. It would drastically help both Kayla and us to be able to get her in and out of a van in her wheelchair than the car. Kayla has never been able to walk and is permanently confined to her wheelchair. However, we are optimistic that maybe one day down the road it could happen.
Kayla is a happy 5 year old girl that loves school, loves playing with family and friends, watching her Gigglebellies musical cartoon, riding her adaptive bike, swimming, swinging and loves to be sung to. Kayla was diagnosed with RETT SYNDROME at the age of 2. It took a multitude of tests such as genetic testing, an MRI and several blood tests to get a diagnosis. The hallmark sign of RETT SYNDROME is the constant repetitive hand movements called hand wringing, clapping or washing but only while awake and this was the key factor in her diagnosis. This is when she lost all purposeful hand use. Kayla also mouths her right hand and that is why you always see a brace on her arm. Kayla’s condition prohibits her from doing almost anything on her own such as dressing, bathing, feeding, drinking, and even playing with toys.
RETT SYNDROME is a rare, devastating, non-inherited, genetic, not degenerative, postnatal neurological disorder and leads to severe impairments, affecting nearly every aspect of Kayla’s life that causes problems in brain functions that are responsible for cognitive, sensory, emotional, motor and autonomic functions. This includes loss of speech, sensory sensations, mood, movement, breathing, cardiac functions, chewing, swallowing, digestion and teeth grinding. Cognitive assessment in children with RETT SYNDROME is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes and their ability to express a wide spectrum of moods and emotions. RETT SYNDROME affects females exclusively and occurs once in every 10,000-15,000 births and is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. RETT SYNDROME strikes all racial and ethnic groups, and occurs worldwide. RETT SYNDROME can happen to any live birth. Because it is so rare, it is often overlooked in the critical early stages, or misdiagnosed. Girls with RETT SYNDROME are born perfectly healthy and develop normally for the first several months. However, at around 6 to 12 months it becomes apparent that certain milestones are not being met. The majority of the time, worried parents who question their pediatricians about their concerns are generally told not to worry, that all children develop at a different rate. It is only the very persistent parent that actually has success in having their daughter tested in this early stage that learns of their daughter’s condition. Between the ages of 1-3, girls with RETT SYNDROME begin to regress and lose critical developmental skills they have previously acquired. At this point it becomes apparent to both parent and physician that there is indeed something wrong, and a simple blood test confirms the diagnosis. The daily care of a child or adult affected with RETT SYNDROME is a tremendous challenge. RETT SYNDROME was reversed in mice in 2007. There is research and clinical trials currently in the works with hope for a cure.
Kayla’s younger sister, Kara who is 3 does not have any physical limitations. Kara is getting to the age where she is becoming much more independent and enjoys activities with her dad and me. She loves her sister very much, but does not understand why Kayla cannot participate in the same activities she does. I know that it would be extremely beneficial to both sisters if they could share in some activities together, as well as facilitate the special bond between them.
As you could imagine, Kayla’s countless therapies, equipment needs, Ankle Foot Orthotics (AFO’s), medical bills and other needs as diapers, wipes, nutritional drinks, etc., have financially overwhelmed our family.
We are beyond grateful for all the love, support, donations and prayers on our behalf.
Thank you so much!
Stan, Kristin, Kayla & Kara Dybas
For further information about RETT SYNDROME please visit www.rettsyndrome.org
This is not only for fundraising purposes, but also to share our journey and spread awareness of RETT SYNDROME. Please share our story with your family and friends.
We are raising funds for a handicapped accessible van to help us get Kayla out on more fun family outings and in a more safe and comfortable manner. This van would be a game changer for our family. She is getting so big and heavy that it’s becoming more difficult to lift her in and out of the car as well as her wheelchair in and out of the trunk. It would drastically help both Kayla and us to be able to get her in and out of a van in her wheelchair than the car. Kayla has never been able to walk and is permanently confined to her wheelchair. However, we are optimistic that maybe one day down the road it could happen.
Kayla is a happy 5 year old girl that loves school, loves playing with family and friends, watching her Gigglebellies musical cartoon, riding her adaptive bike, swimming, swinging and loves to be sung to. Kayla was diagnosed with RETT SYNDROME at the age of 2. It took a multitude of tests such as genetic testing, an MRI and several blood tests to get a diagnosis. The hallmark sign of RETT SYNDROME is the constant repetitive hand movements called hand wringing, clapping or washing but only while awake and this was the key factor in her diagnosis. This is when she lost all purposeful hand use. Kayla also mouths her right hand and that is why you always see a brace on her arm. Kayla’s condition prohibits her from doing almost anything on her own such as dressing, bathing, feeding, drinking, and even playing with toys.
RETT SYNDROME is a rare, devastating, non-inherited, genetic, not degenerative, postnatal neurological disorder and leads to severe impairments, affecting nearly every aspect of Kayla’s life that causes problems in brain functions that are responsible for cognitive, sensory, emotional, motor and autonomic functions. This includes loss of speech, sensory sensations, mood, movement, breathing, cardiac functions, chewing, swallowing, digestion and teeth grinding. Cognitive assessment in children with RETT SYNDROME is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes and their ability to express a wide spectrum of moods and emotions. RETT SYNDROME affects females exclusively and occurs once in every 10,000-15,000 births and is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. RETT SYNDROME strikes all racial and ethnic groups, and occurs worldwide. RETT SYNDROME can happen to any live birth. Because it is so rare, it is often overlooked in the critical early stages, or misdiagnosed. Girls with RETT SYNDROME are born perfectly healthy and develop normally for the first several months. However, at around 6 to 12 months it becomes apparent that certain milestones are not being met. The majority of the time, worried parents who question their pediatricians about their concerns are generally told not to worry, that all children develop at a different rate. It is only the very persistent parent that actually has success in having their daughter tested in this early stage that learns of their daughter’s condition. Between the ages of 1-3, girls with RETT SYNDROME begin to regress and lose critical developmental skills they have previously acquired. At this point it becomes apparent to both parent and physician that there is indeed something wrong, and a simple blood test confirms the diagnosis. The daily care of a child or adult affected with RETT SYNDROME is a tremendous challenge. RETT SYNDROME was reversed in mice in 2007. There is research and clinical trials currently in the works with hope for a cure.
Kayla’s younger sister, Kara who is 3 does not have any physical limitations. Kara is getting to the age where she is becoming much more independent and enjoys activities with her dad and me. She loves her sister very much, but does not understand why Kayla cannot participate in the same activities she does. I know that it would be extremely beneficial to both sisters if they could share in some activities together, as well as facilitate the special bond between them.
As you could imagine, Kayla’s countless therapies, equipment needs, Ankle Foot Orthotics (AFO’s), medical bills and other needs as diapers, wipes, nutritional drinks, etc., have financially overwhelmed our family.
We are beyond grateful for all the love, support, donations and prayers on our behalf.
Thank you so much!
Stan, Kristin, Kayla & Kara Dybas
For further information about RETT SYNDROME please visit www.rettsyndrome.org
Organizer
Kristin O'Toole
Organizer
Chicago, IL
