Kim's Rare Disorder

My stepdaughter has been diagnosed with Mtochondrial Disease. It's not well know and has NO know cure.

What are the Challenges of Living with Mitochondrial Disease?

Affects multiple organs, affects multiple family members, affects multiple generations.

Lack of awareness and understanding of the disease.

Families are continuously forced to expend their very limited energy to explain their disease, advocate for themselves and fight for services.

Mitochondrial disease is often an "invisible disease."

Good day - Patients look fine and healthy. They have more energy and appear rested.

Bad day - - Patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated "bad days"often lead to decompensation and patients have difficulty returning to baseline.

Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.

Difficulties establishing a diagnosis interfere with a patient's ability to obtain adequate recognition, medical care, insurance coverage, healthcare supports, and disability services.

Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized.

An individual can become symptomatic at any time in life despite the fact that it is inherited.

It is difficult to diagnose

Kim is completely reliant on support and transport from others for everything from Drs visits to the supermarket. We are raising funds to help purchase a hand controlled car to gain some Independance.