Victim of Degenerative Eye Disease : ‘TV Friends’ Help Fulfill Girl’s Dreams

Just about all of 10-year-old Mandy Porter’s dreams came true on her summer vacation in California this week.

The blue-eyed, freckle-faced St. Louis native went to all the usual places that a tourist her age would go: the beach, Disneyland, Knott’s Berry Farm. She also managed to go to several spots where few tourists get the chance to tread.

Last week she was a featured guest on “A.M. Los Angeles.” Afterward, basketball star Kareem Abdul Jabbar presented her with a gift. A few days later, she lunched with singer Stevie Wonder and received a big kiss from the Grammy Award-winning musician.

So she was only mildly disappointed when the dream of meeting reclusive rock star Michael Jackson fell through.

After writing Jackson a letter, Mandy was hoping that he would escort her in a limousine to a benefit concert featuring Wonder, Julio Iglesias, Whoopi Goldberg and others Thursday night at the Dorothy Chandler Pavilion. Instead, she rode to the benefit with her mother, stepfather and older brother in a rented car.

But the precocious fourth-grader’s high spirits were undampened. At an interview at her Woodland Hills hotel Thursday afternoon, several hours before the event, Mandy was already dressed in her new ankle-length yellow dress. She bubbled over with excitement, inviting all who spoke with her to attend the benefit. She sang her own compositions, imitated Mr. Ed, one of her favorite television characters, and called all the hotel employees her “fans.”

Mandy said she had wanted to make this trip to see all her “TV friends” while she still can.

Afflicted with retinitis pigmentosa (RP), a degenerative eye disease, Mandy has been losing her sight steadily for four years and is almost blind in her right eye. At night she can’t see at all, and by day her vision is limited, causing her to trip and fall sometimes, said her mother, Carole Nowicki.

Mandy was diagnosed with the disease at 6 years old after she got up late one night to go to the bathroom and walked into a wall, her mother said.

RP is a hereditary disease in which the retina degenerates into tiny patches and affects about a million people in the United States, according to medical sources. It has no known treatment or cure.

Raising Funds for Cure

As an unofficial emissary determined to increase awareness of RP and raise funds for a cure or treatment, Mandy Porter has written nearly 100 letters to celebrities, Nowicki said.

“Writing letters is one of the things I like best,” Mandy said. “I think it’s fun to write, and I try to make my letters good.”

The fan letters usually include a mention of RP and an explanation of what she suffers.

Nowicki said she has urged doctors to let her daughter listen as her illness is explained to them. “She knows everything we know, and I think that’s why she’s so well-adjusted about it,” she said.

Porter and her family are in the San Fernando Valley for two weeks as guests of R.P. International, a nonprofit organization based in Woodland Hills that raises funds for research on RP. A fresh-faced, all-American girl, Mandy is soon to become R.P. International’s poster child for the Midwest. She said she simply “can’t wait” to make the myriad required appearances at fund-raisers.

Her involvement with the charitable organization began last February when Mandy heard about a telethon that Sammy Davis Jr. was hosting for crippled children in St. Louis. She and her mother had tried to attend the telethon a year before, but Mandy was knocked to the floor by people who did not know her sight was impaired. Her mother encouraged her to send a letter with her $5 contribution, five weeks worth of allowance.

“In her letter, she said she had gotten pushed down, and she asked if he didn’t mind if she sent her pledge in instead,” Nowicki said. “She said she wanted to help children get wheelchairs and artificial arms if they needed it, because their problems were so much worse than hers.”

Davis read the letter on the air at this year’s telethon and was so moved that he sent a limousine for Mandy and had her help him host half an hour of the telethon.

“I raised $11,000 and 21 cents,” Mandy said. “They pledged it in my name. All 60 of the phone things started lighting up real fast.”

Back home in St. Louis, Mandy is taking Braille lessons and is learning to walk with a cane, in preparation for the inevitable. However, she insists she will not go blind, and said she only thinks about permanently losing her vision at night when she can’t see her bedroom. “But I can handle it.”

Mandy has taught herself sign language because, “if I can’t see and I meet a friend who is deaf, then I can talk to her and she can talk to me,” she explained.

Plan to Start Chapter

Mandy and her mother plan to start a chapter of RP International in St. Louis upon their return. “I’m going to be the secretary, and I’m going to do all the typing. I’ve been memorizing where all the keys are,” Mandy said.

Nowicki has taught her daughter that she should not let any handicap keep her from pursuing her dreams. “I tell her that, if a deaf woman can win an Oscar, a blind girl can be an actress,” she said.

And Mandy’s career aspirations seem to have been cemented during this trip spent around celebrities and in the spotlight. When asked what she wants to do when she grows up, Mandy is quick to answer: “I just want to be a movie star like all my movie star friends.”