Here you will be able to read very inspiring stories regarding Retinitis Pigmentosa.
Mr Gutierrez was looking for inspiring stories that give us hope and that make us understand seeing is not all we have in life, and found thse two stories that are transcripted from www.jwen.com and from www.blindness.org
A Life on Hold for the Love of a Little Girl
By Kevin Sherrington
From Philly.com
Mike Veeck is back in the big leagues, which is good news for him as well as the Florida Marlins, who are calling him a "creative consultant."
How would you describe the job, Mike?
"I would call it a trip back in on a part-time basis, yet still a way to keep me at arm's length," he says, mocking himself, which is a guilty habit.
Baseball remains reluctant to embrace Bill Veeck's son. Some still remember "Disco Demolition Night," his 1979 promotion - or "my signature," as he puts it. That promotion detonated a riot in Chicago and resulted in his self-imposed exile to 10 years in a bottle.
Minor-league baseball saved him. He owns and runs five franchises, which is like saying Picasso owned a lot of paint and brushes. In St. Paul, Minn., at the ballpark of his most famous club, a nun gives neck massages, a pig delivers baseballs and, perhaps most outlandish of all, the Saints actually give fans their money's worth.
The minors are fun, but Mike Veeck keeps coming back to the big leagues, where the father he idolized is a legend.
Veeck says he left the Tampa Bay Devil Rays in the summer of '99 before he was ready to.
"For personal reasons" was how the wire story put it.
The longer explanation is harder.
How do you say that you're going home because your 7-year-old daughter is going blind?
The clinical term for Rebecca's problem is retinitis pigmentosa. The first symptom is poor central vision. That is followed by night blindness and, finally, the inexorable fade to black.
So in the two, three - who knew how many? - years of vision Rebecca had left, Mike and Libby Veeck decided to give their daughter a lifetime of images to recall.
For much of the last 18 months, the Veecks have been on the road. San Francisco. Guadalajara. Yosemite. The ornate architecture of the Grand Canyon and the minimalist beauty of Death Valley.
Thirty-two states they've covered.
Eighteen to go.
"We went to Disney World for a week and stayed two," Mike Veeck says. "We went to New England to see the leaves changing, and we went to Cooperstown so she could see her grandfather's plaque in the Hall of Fame."
Her favorite?
"Maryland," Veeck says. "We all grew up there. We even bought a second home down the street from one of the friends I grew up with."
Always on the run, Veeck never was big on houses. But the trip to Maryland taught him something. In December, the Veecks bought a house in Charleston, S.C. For the first time, Rebecca and her 14-year-old brother had a neighborhood and dozens of playmates and a normal life - or what passes for one with parents who would name their only son Night Train.
But life isn't normal. Not at all. The last two months for Rebecca, who is now 9, have been increasingly difficult. Most books are impossible for her to decipher now. Only a special closed-circuit television that enlarges print by 10 times allows her to read on her own. Already, she is learning braille.
How is she handling it? In testimony last year on behalf of the Foundation for Fighting Blindness, Mike Veeck told a congressional subcommittee that Rebecca would lie in bed at night with the lights on, afraid that if she went to sleep, she might wake up blind.
"As a parent," he told the subcommittee, "you can imagine the utter helplessness you feel in not being able to calm your daughter's fears."
Now, amazingly, she seems to be outgrowing them. She has her grandfather's sense of humor, her father says, recalling how Bill Veeck used his artificial leg as an ashtray during interviews.
As a father, though, you're not always prepared for what your child might say. Once when Mike Veeck was walking hand-in-hand with Rebecca, she looked up at a brilliant blue sky and said: "It's OK, Daddy, if I go blind, because I'll always have you and Mom with me to tell me what you see."
A daughter has come to terms with her fate.
But what is a father to do?
Go to work.
Dave Dombroski, the Marlins' general manager, had known Mike Veeck for more than 25 years, and he knew that Rebecca's vision had turned worse, and he knew that Mike needed to go back to something else he loved.
Are the big leagues therapy, Mike?
"Selfishly, there is no question," he says. "Definitely. Therapy."
So, at Marlins games this summer, look for the return of Lawyer Appreciation Night, on which attorneys pay double. But don't look too often for Mike Veeck, who enjoys the part-time work but has a larger mission now. A national one.
"Next month," he says, "is Oregon and Idaho."
Two more down. Sixteen to go.
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Kevin Sherrington is a columnist for the Dallas Morning News, where this column originally appeared.
Now from The Foundation Fighting Blindness website we saw this as feature story: the little girl tells how she feels:
Sometimes I get upset because I won't be able to drive. I can't read books and that stinks. I used to be able to read an entire book in 2 days. Now I watch my parents read or go online and it's frustrating.
But I don't let it slow me down. I like to dance, play piano, ride horses, and swim. I can read books - on tape - sometimes getting through an 800-page book in a day. I go to the ballparks and have fun. I can still have as much fun as I want. I see people, especially adults, who have perfect eyesight and don't seem capable of having fun. That's sad.
It seems like some people have forgotten how to have fun. They do things for money, not for the fun of it.
These people even have a hard time having fun at ballparks, where it's impossible not to enjoy yourself.
It's the same thing when it comes to dealing with customers. People behind the front desk should be ecstatic to help customers. Instead, they often give off an air of "What do you want?" You don't need perfect eyesight to see the difference.
I'm extremely lucky to have grown up learning to deal with adversity by looking for the fun in life. For me, the basic idea is that if you don't think you're going to have fun, you won't, and you end up having an air of sadness and depression that pulls you and everyone around you down.
If I didn't keep myself busy, I don't know how sad I'd be. I have to try twice as hard as the other students at my school to get the same grades and I'm okay with that. It's when I'm easy on myself or feel sorry for myself that things start slipping out of control. I imagine it's that way for everyone.
Fun Is Good because that's the way life is supposed to be. It's the main feeling that we're supposed to have. I mean, if you're not having fun, what's the point?
An excerpt from Fun Is Good - How to Create Joy & Passion in Your Workplace & Career
Written by Mike Veeck and Pete Williams
