Evie’s Grand Adventure Fund
Donation protected
A BRIEF BACKSTORY: Evie was born with Campomelic Dysplasia, a rare and typically lethal form of dwarfism. The most common traits of Campomelic Dysplasia are bowing of the long bones, small chest and airway, under formed shoulder blades and knee caps, dislocated joints, and hearing loss. The most concerning trait being the small chest and narrow airway which often leads to respiratory distress that is frequently fatal in infancy. We were given very little hope during pregnancy, but Evie has proven all of the doctors wrong! She is strong and determined to not let her many underlying conditions hold her back. At 8.5 years old Evie has conquered over 35 surgeries, hundreds of doctor appointments, and years of therapies.
Evie also has a second rare condition called Eosinophilic Esophagitis (EoE). EoE is a condition where the body sees many foods as something that should not be there. This triggers and immune response that causes white blood cells to build up in the throat. This can cause many uncomfortable symptoms and left untreated could cause a lifetime of problems. EoE limits what foods are safe to eat, for Evie that means she only has 5 safe foods. Having both EoE and Campomelic Dysplasia causes significant delay in growth. At almost nine years old Evie is closer to the size of a three year old. She may be small but her spirit is fierce!
WHY AND WHAT: With Evie having two rare conditions it can be difficult to find doctors knowledgeable about treatments. To get Evie the care she needs we currently travel on a regular basis to three different hospitals in three different states. We travel to hospitals in Cincinnati, Delaware, and the other side of Michigan. Evie also has many therapy appointments locally. In order to be able to get Evie to all of these appointments I am unable to work. It also means Corey has frequent interruptions in his work schedule to be with Evie’s sister, Adeline. While insurance covers most of our medical bills we are still responsible for travel expenses including hotels, gas/car maintenance or flights, and food while away. These costs add up quickly especially with interruptions in our income. Insurance also does not cover expenses such as adaptive equipment, wheelchair ramps, over the counter medications, and specialized food.
HOW YOU CAN HELP: We are asking for your help with expenses such as equipment that insurance is unable to cover, vehicle costs, and travel. We feel so blessed to have such an incredible community of people showering Evie in love and prayer. We are hoping that once again you can raly around us and help relieve some of our burden. Thank you!
LEARN MORE ABOUT EVIE: www.facebook.com/eviesgrandadventure
Evie also has a second rare condition called Eosinophilic Esophagitis (EoE). EoE is a condition where the body sees many foods as something that should not be there. This triggers and immune response that causes white blood cells to build up in the throat. This can cause many uncomfortable symptoms and left untreated could cause a lifetime of problems. EoE limits what foods are safe to eat, for Evie that means she only has 5 safe foods. Having both EoE and Campomelic Dysplasia causes significant delay in growth. At almost nine years old Evie is closer to the size of a three year old. She may be small but her spirit is fierce!
WHY AND WHAT: With Evie having two rare conditions it can be difficult to find doctors knowledgeable about treatments. To get Evie the care she needs we currently travel on a regular basis to three different hospitals in three different states. We travel to hospitals in Cincinnati, Delaware, and the other side of Michigan. Evie also has many therapy appointments locally. In order to be able to get Evie to all of these appointments I am unable to work. It also means Corey has frequent interruptions in his work schedule to be with Evie’s sister, Adeline. While insurance covers most of our medical bills we are still responsible for travel expenses including hotels, gas/car maintenance or flights, and food while away. These costs add up quickly especially with interruptions in our income. Insurance also does not cover expenses such as adaptive equipment, wheelchair ramps, over the counter medications, and specialized food.
HOW YOU CAN HELP: We are asking for your help with expenses such as equipment that insurance is unable to cover, vehicle costs, and travel. We feel so blessed to have such an incredible community of people showering Evie in love and prayer. We are hoping that once again you can raly around us and help relieve some of our burden. Thank you!
LEARN MORE ABOUT EVIE: www.facebook.com/eviesgrandadventure
Organizer
Kassie Paradowski
Organizer
Caledonia, MI
