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Our Story: How it Began
On May 12th my daughter, Elizabeth Lizzie Lulu
lost her lifelong fight with Cystic Fibrosis. Fight, however,
is a difficult word to use when we think about Liz. While she did,
indeed, fight against this horrible disease her entire life, she
never let her nemesis get the best of her. In one televised interview,
Liz commented about CF as something she would just have to deal
with her entire life. For her, it was just a part of her day to
day. Because Elizabeth wasn’t defined by her disease, she was
defined by her personality, her charm, her wisdom and her intelligence.
As we well know, CF is a killer. You can fight a war with CF but, in the end, Cystic Fibrosis always wins. It tore up her lungs, her sinuses, clubbed her fingers and her toes. CF, and the subsequent diseases she encountered; some she was born with and others brought on by the many medications she was taking, ravaged her body, but never touched her mind. Cystic Fibrosis COULDN'T touch her mind. The one thing that defined Lizzie was the one thing that was left untouched by this horrible disease.
Elizabeth, I, and her stepmother, Beth, had talked a lot about college and education. This was a primary subject with me and I was concerned that, because of her setbacks and obstacles, she would have trouble when the time came to go to college. Cystic Fibrosis kids miss an awful lot of school and Liz was no exception; her 33 hospital stays over the last 8 years saw to that.
One day Elizabeth saw a poster in the Apple Store for a pink iPod Mini. Pink was her favorite color, and being such a fan of music, of course, Liz wanted one.
"Why do you deserve an iPod?" I asked. "It's not your birthday, and it's not Christmas. You tell me why I should spend $200 on an iPod for you. Because you are cute?"
Like the 11 year old she was, she said "yes."
We made a deal. Liz had wanted to read Harry Potter and the Sorcerer's Stone and she was having some trouble. While she understood words, she had little knowledge of punctuation, and, therefore, comprehension was a hurdle. Since we had two copies of the book in our house, I gave her one and kept the other. I told her, "If you read this book and any other books, I will give you 10 cents a page."
Within two weeks, Elizabeth called us to say that she had finished the first chapter. She gave us a detailed report on it. Within two months she finished the entire book. After a little more than a year, we dumped out her change bucket to discover that she had amassed 170 dollars.
"I put 20 dollars of my own in," she said, sheepishly.
"I did, too," I told her.
That couldn’t deny the fact that Elizabeth had read 1300 pages in a year and a half. We bought that iPod together that day and loaded it with music she loved. She took it with her everywhere she went.
The morning Elizabeth died, I happened to read a story about a 32-year-old man
with Cystic Fibrosis who had said that he was told that he would be dead by
18. So, at 16, he gave up on school, figuring he would die in High School anyway.
When he was in his 20's, still alive and working dead end jobs, he realized
that he might need to get a career. He got a degree in accounting, got married,
and had a bunch of children.
Elizabeth wanted so very much to go to college. She was very determined in her desire to be a nurse. She figured that with the number of times she had been hospitalized, she was in a unique position to help other children who were sick.
This brings me to The Elizabeth Lulu Scholarship Foundation, the purpose
of this letter. Qualified teenage applicants with Cystic Fibrosis and dreams
of college will be awarded an amount to be determined to help them with
their first year of college. It is our hope to award the scholarship money
toward the end of their sophomore year of high school, on the day of Elizabeth’s
passing. We want to give them just one more reason to beat the odds, not
give up, and continue to believe in themselves. On that first day of college,
they will be given a check that they can use however they see fit to give
them a start; maybe they need a laptop or a new wheelchair; a new nebulizer
or money for books, or to just to help defray the cost of their first semester.
And maybe they’ll have a few bucks left over to replace their old iPod
and fill the days with music the way Lizzie did.
If you would like to help us with our endeavor please feel free to click the Donate button at the top of the page or send a check to The Elizabeth Lulu Scholarship Foundation, 1760 W. 25th St., Los Angeles,CA 90018. Your tax deductible donation will go a long way to help a dream become a reality.
In this way, perhaps, Elizabeth Lulu can go to college every year. |
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