Kaylee's Warriors
Donation protected
The friends and family of Kaylee Studley are having a fundraiser on January 20th, 2018 at the American Legion in Round Lake Park, from 2-6 pm. We decided to have a GOFundMe page also for people whom have asked about it and cannot make the fundraiser.
Kaylee has been diagnosed with Ehler Danlos Syndrome (EDS) and Postural orthostatic Tachycardia syndrome (POTS). EDS is genetic and there is no cure.
Ehlers -Danlos -The Ehlers-Danlos syndrome is inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues). - This causes dislocations and chronic fatigue and pain.
EDS- Causes extreme joint pain for Kaylee, abdominal pain, migraines, Reynauds and many other health issues.
Postural orthostatic Tachycardia Syndrome / POTS -
Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia. With POTS, the body does not control blood pressure or heart rate as it should after you stand up. So for a brief time, you may not get enough blood to your brain. This can make you feel dizzy and lightheaded. You might faint. Sitting or lying down helps you feel better.
For many people with POTS, fatigue and other symptoms may make it hard to keep up with daily living.
The proceeds from the benefit will be used for Kaylee’s stay in Rochester MN., where Mayo Clinic is located. Kaylee has been evaluated and accepted into the Pediatric Pain Management Program. The program costs $30,000-$40,000 and insurance does not cover all the costs. Insurance does NOT COVER ANY lodging, food, transportation or loss of income, as a parent is required to be present. There is also a two day follow up 2 months after the program is completed.
We never plan for things like this to happen. It is our mission to give Kaylee the best quality of life possible.
The family would like to thank you in advance for your support, and truly appreciates anything you are able to afford for this very special cause. If you have any questions, please feel free to contact us.
Kaylee has been diagnosed with Ehler Danlos Syndrome (EDS) and Postural orthostatic Tachycardia syndrome (POTS). EDS is genetic and there is no cure.
Ehlers -Danlos -The Ehlers-Danlos syndrome is inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues). - This causes dislocations and chronic fatigue and pain.
EDS- Causes extreme joint pain for Kaylee, abdominal pain, migraines, Reynauds and many other health issues.
Postural orthostatic Tachycardia Syndrome / POTS -
Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia. With POTS, the body does not control blood pressure or heart rate as it should after you stand up. So for a brief time, you may not get enough blood to your brain. This can make you feel dizzy and lightheaded. You might faint. Sitting or lying down helps you feel better.
For many people with POTS, fatigue and other symptoms may make it hard to keep up with daily living.
The proceeds from the benefit will be used for Kaylee’s stay in Rochester MN., where Mayo Clinic is located. Kaylee has been evaluated and accepted into the Pediatric Pain Management Program. The program costs $30,000-$40,000 and insurance does not cover all the costs. Insurance does NOT COVER ANY lodging, food, transportation or loss of income, as a parent is required to be present. There is also a two day follow up 2 months after the program is completed.
We never plan for things like this to happen. It is our mission to give Kaylee the best quality of life possible.
The family would like to thank you in advance for your support, and truly appreciates anything you are able to afford for this very special cause. If you have any questions, please feel free to contact us.
Organizer
Amber Brunati
Organizer
Round Lake Beach, IL
