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Paul Harty and Eric Harty are not only first cousins; they are friends. Eric looks up to Paul, who is older. Paul admires Eric's artistic ability. They are both musicians. They support each other. They are as close as brothers.
I have lost so much connection with the world and other people. The deepest loss is with my family. Sometimes my perception of their indifference to me becomes intense. In a nutshell my family values most highly success, prestige, and status. Success to them means being number one, a winner. They work hard to stay on top. They all base their value on professional competence and aim at being the best at what they do, mainly for prestige for being at the top of their profession.
August 10-14, 2009
Camp Korey, near Seattle Washington, is hosting a week dedicated to kids with mitochondrial disease. MitoAction is proud to partner with Camp Korey by sponsoring a camper and helping financially to offset travel and other camp expenses. MitoAction Board of Directors member Gordon Russell is a counselor at Camp Korey this week, and will be updating us daily with pictures and stories about this once-in-a-lifetime opportunity.
July 2009, Boston MA
Sandra Russell is a mother of two boys, ages 22 and 18. It's no wonder she's tired after raising two boys, with her husband Gordon, and co-owning and running a chain of retail stores. But her fatigue was more than the norm, says Gordon. "The first noticeable symptom was her hearing loss, and she had trouble keeping up with the busy pace of our life. I became frustrated with this as I felt like I was always having to remind her of the tasks she was supposed to be doing."
Six year old Janis enjoys life in Maine with her adoptive parents Tom and Karen Kohlmeyer.. She was born with the inability to tolerate food and ended up with a fundoplication and a G tube at the weight of just over 9 pounds. She was abandoned at the hospital but soon after embraced by a loving family.
Joey's smile lights up the world and the hearts of those who know him. He is a beautiful three year old boy with thick dark hair, large brown eyes, and a contagious smile.
Within hours of his birth, Joey began to have seizures which are now only partially controlled by medication. Joey was diagnosed with Mitochondrial Encephalomyopathy when he was seven months old. Mito robbed Joey of the ability to walk, sit, stand, speak and swallow but it hasn't robbed Joey of his joy for life.
For six months we have been fighting with our insurance company in order to get our daughter Eva a wheelchair. She turns 4 in April, and all of a sudden we left the world of overgrown baby items and crossed over into the land of special needs and durable medical equipment. Eva has Leigh's disease, a form of mitochondrial disease, that affects her muscles and neurologic system such that she cannot walk or talk. Sounds terrible, right? In reality, once we got over the diagnosis, we find so much joy in Eva.
Brianna Couture
You may hear Brianna singing in local musicals or see her teach Tai Kwon Do to children. You may notice her lovely voice and her smile. You may notice the blackbelt that she wears at Tai Kwon Do. But you probably won't notice mitochondrial disease. Brianna was diagnosed with mitochondrial disease as an infant but has not let it get in the way of her dreams.
