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:
Lifting weights
Walking, stretching and using the Anti-Gravity Treadmill (AlterG)
Watching sports (basketball, football, wrestling, boxing, golf, etc.)
Playing games (Wii, PS3, etc.)
Watching funny movies
Reading
Eating ice cream (good ice cream)
Playing with his cats (Greta and Eli) and dog (Gracie)
Teasing his brother
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 shooting hoops
Graham and Evan in Baltimore
Medications Evan Takes:
- Vitamin E – 400 units / day
- Idebenone – 45 mg per Kg of body weight
- Vitamin D – 4000 units / day
- L-Carnitine – 2 teaspoons 3 times / day
- Creatine
- Curcumin – 1 750 mg tablet / day
- Baclofen – 10 mg / night
