About Evan
Evan Michael Luebbe was born August 26, 1996 in Montgomery, Ohio. Evan currently lives in Liberty Twp., Ohio with his mom (Tammy), dad (Greg) and little brother (Graham). Liberty Twp. is just 20 minutes North of the heart of Cincinnati, home of the Cincinnati Reds, Bengals and Blaze.
Evan is into cool things like:
Basketball (can’t get enough of college or professional)
Football
Game Cube
Wii
Reading
Any kind of math (just like Dad)
Watching funny movies
Playing with his Himalayan cats named Simon and Eli
He coaches his brother in basketball and football
And, girls are starting to be a “little” interesting
Status:
Evan is not fully aware of his condition at this time and the progression of FA. He has asked very few questions to date, although he realizes he is going to the doctor more often. He also knows that he has to listen, watch and feel when his heart may act differently. He is in both Physical and Occupational Therapy to keep him strong and flexible. He has had a few colds and infections which can make the ataxia (balance) more prominent during those times. When tested, Evan does not have reflexes in his knees and he tested positive for cardiac hypertrophy, a thickening of the heart walls for which he is taking medication for now. Cold weather is also more difficult for those with FA; during winter, we notice his balance is a bit worse than in the summer months.
Evan playing baseball with
Grandpa in Antwerp
Mom playing with Evan’s haircut!
Medications Evan Takes:
- 400 IU of Vitamin E per day
- 40 mg/kg Idebenone per day
- L-Carnitine 2 teaspoons
3 times a day
