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do you speak, eat & breathe properly? Kailer can't
Can you imagine not being able to bite your food because your teeth don't connect? Can you fathom suffering intense digestive pain because you are unable to chew your food? Can you imagine how uncomfortable and exhausting it would be having a dry mouth and interrupted sleep every night of your life because you have to breath through your mouth? Or what it might be like to have your peers laugh and point, to never fully comprehend a single syllable you utter because your tongue is too big and your mouth is too small and you literally lack the physical ability to close your mouth? Consider for a minute how these things would affect your life physically, mentally, and emotionally, and you might begin to understand just one of the many challenges Kailer has to cope with. Then consider that the only thing stopping him from having it fixed is money.
Kailer was born with congenital defects (a deviated septum and macroglossia) that contributed to him developing orofacial myofunctional disorder (OMD, often called "tongue thrust") which affects a person's ability to breath and speak properly as well as makes chewing food difficult, leading to severe digestive problems. Unfortunately, due to an infection and high fever that left him in coma for 7 days when he was two, Kailer also suffers several cognitive and behavioural delays that have required more immediate attention and ultimately prevented him from being properly diagnosed and treated for his OMD until he was 9 years old.
When you see him in public and he is misbehaving, talking loudly and getting angry because no one understands him, you might think he is just a bad kid whose parents need to discipline him more. What you don't see is that Kailer is a sweet and caring 10-year old boy with lots of energy and a wonderful sense of humour who just wants so badly to be understood, accepted, and liked. He is a bit of a daredevil and comes off tough but he is very sensitive about his disabilities which have made it difficult for him to communicate and to succeed in school. The speech delays and facial disfigurement combined with cognitive and behavioural challenges have caused Kailer an inability to feel accepted by a peer group, adding social development delays to the obstacles this young man has to overcome.
Earlier this year, Kailer was finally outfitted with a dental appliance that is intended to widen his palate, realign his teeth/jaw, correct his deviated septum, and address the painful and embarrassing digestive issues caused by improper chewing of food. The orthotropic appliance, medical/dental treatment, and OMD therapy needed to help him learn how to use his facial muscles will cost upwards of $10,000. Despite Kailer's Mom (Crystal) having met with their MLA to make a request on Kailer's behalf, his appliance and treatments are not currently covered by Alberta Health Care (AHC) nor are they covered by the family's standard health or dental insurance as it is considered "cosmetic." While the family is continuing its fight to appeal this, the bills have already started pouring in and Kailer's speech therapy has been completely aside and they have had to delay starting his OMD therapy, both which are also not covered by AHC.
Kailer has enough difficulties facing life without the added stress and frustration of being unable to eat, breath, and communicate properly, something most of us just take for granted. In Kailer's case, this treatment is far from "cosmetic" as correcting his OMD will not only allow him to finally learn to speak in a way that others can easily understand and alleviate the discomfort of his digestive problems, but will hopefully increase his self-esteem and confidence so that he may begin to close some of the social gaps that cause him the kind of teasing, pain and loneliness no child should ever have to endure.
Your contribution will help pay for Kailer's appliance and OMD therapy costs, but more importantly will help this little boy overcome just one of the many challenges he is facing. If we get a ruling in our favour from AHC and the appliance and treatments are fully or partially covered, any remaining or excess funds raised will be donated to the ABC Headstart Program here in Edmonton to help other kids who might face challenges similar to Kailer's. http://www.abcheadstart.org
You can find out more about OMD here: http://www.asha.org/public/speech/disorders/OMD.htm#e
Kailer was born with congenital defects (a deviated septum and macroglossia) that contributed to him developing orofacial myofunctional disorder (OMD, often called "tongue thrust") which affects a person's ability to breath and speak properly as well as makes chewing food difficult, leading to severe digestive problems. Unfortunately, due to an infection and high fever that left him in coma for 7 days when he was two, Kailer also suffers several cognitive and behavioural delays that have required more immediate attention and ultimately prevented him from being properly diagnosed and treated for his OMD until he was 9 years old.
When you see him in public and he is misbehaving, talking loudly and getting angry because no one understands him, you might think he is just a bad kid whose parents need to discipline him more. What you don't see is that Kailer is a sweet and caring 10-year old boy with lots of energy and a wonderful sense of humour who just wants so badly to be understood, accepted, and liked. He is a bit of a daredevil and comes off tough but he is very sensitive about his disabilities which have made it difficult for him to communicate and to succeed in school. The speech delays and facial disfigurement combined with cognitive and behavioural challenges have caused Kailer an inability to feel accepted by a peer group, adding social development delays to the obstacles this young man has to overcome.
Earlier this year, Kailer was finally outfitted with a dental appliance that is intended to widen his palate, realign his teeth/jaw, correct his deviated septum, and address the painful and embarrassing digestive issues caused by improper chewing of food. The orthotropic appliance, medical/dental treatment, and OMD therapy needed to help him learn how to use his facial muscles will cost upwards of $10,000. Despite Kailer's Mom (Crystal) having met with their MLA to make a request on Kailer's behalf, his appliance and treatments are not currently covered by Alberta Health Care (AHC) nor are they covered by the family's standard health or dental insurance as it is considered "cosmetic." While the family is continuing its fight to appeal this, the bills have already started pouring in and Kailer's speech therapy has been completely aside and they have had to delay starting his OMD therapy, both which are also not covered by AHC.
Kailer has enough difficulties facing life without the added stress and frustration of being unable to eat, breath, and communicate properly, something most of us just take for granted. In Kailer's case, this treatment is far from "cosmetic" as correcting his OMD will not only allow him to finally learn to speak in a way that others can easily understand and alleviate the discomfort of his digestive problems, but will hopefully increase his self-esteem and confidence so that he may begin to close some of the social gaps that cause him the kind of teasing, pain and loneliness no child should ever have to endure.
Your contribution will help pay for Kailer's appliance and OMD therapy costs, but more importantly will help this little boy overcome just one of the many challenges he is facing. If we get a ruling in our favour from AHC and the appliance and treatments are fully or partially covered, any remaining or excess funds raised will be donated to the ABC Headstart Program here in Edmonton to help other kids who might face challenges similar to Kailer's. http://www.abcheadstart.org
You can find out more about OMD here: http://www.asha.org/public/speech/disorders/OMD.htm#e
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