Chemotherapy needed for brain tumor Blind Hiller, 8, wins nation honors for his writing

Posted 9/29/11

by Reginald Hall Jr. If you were to ask eight-year-old Nicky Lentz what he wants to do for a living when he gets older, he wouldn’t have an answer for you. However, the Chestnut Hill resident would …

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Chemotherapy needed for brain tumor Blind Hiller, 8, wins nation honors for his writing

Posted

by Reginald Hall Jr.

If you were to ask eight-year-old Nicky Lentz what he wants to do for a living when he gets older, he wouldn’t have an answer for you. However, the Chestnut Hill resident would most likely remember minute details of your conversation with him — even months later. This is because Nicky craves auditory stimulation.

[caption id="attachment_9039" align="alignleft" width="300" caption="Nicholas (Nicky) Lentz, 8, of Chestnut Hill, has won third place in the elementary short story category of the Youth Writing Contest of the nonprofit National Federation of the Blind (NFB) Writers’ Division."][/caption]

Words, sounds, and conversation are the eyes that Nicky uses to see the world since losing his vision at the age of just six months. Recently Nicky turned his love of language into the short story, “New Friends,” a tale describing Nicky’s appreciation for his fictional new friends and their exploits building houses together.

Nicky, who is totally blind, enjoys using his white cane to walk solo to Starbuck’s for tea. He loves teddy bears, is learning to swim and is in second grade at St. Lucy’s Day School for Children with Visual Impairments, 4251 L St. in the Lower Northeast, part of the Archdiocese of Philadelphia. He loves school and his teacher, Kathleen Cleaver.

Spurred by the urging of teachers at the St. Lucy’s Day School, Nicky submitted his story to an annual writing contest created by The National Federation of the Blind Writers’ Division, where he was awarded 3rd place in the elementary division.

Writing an award-winning story is impressive, but Nicky’s ability to overcome a life-threatening illness and a visual disability makes his award even more rewarding. Eight years ago, doctors at Chestnut Hill Pediatrics discovered that Nicky had a tumor in his brain when he was four-months-old. The early diagnosis saved Nicky’s life. But two months later, Nicky lost his sight as a result of the brain tumor. Nicky continues to undergo chemotherapy treatment, but doesn’t let his physical disabilities dampen his spirit.

“He’s very gregarious, definitely a character,” explained Suzanne Lentz, Nicky’s mother. “Anyone who knows him would say he’s a character. He likes talking with adults. He can’t see their faces, but he can remember their voices. At times he can be shy like any eight-year-old, but he likes to make people laugh, so he can be overly dramatic to provoke an audio response like laughter or a chuckle or something.”

Ready and available adults aren’t always around to give Nicky audio feedback, so he also uses technology for his benefit. Books written before 1932 are now in the public domain so people have been recording them for free. As a result, Nicky has taken a liking to listening to books on his iPad such as “Huckleberry Finn,” “Tom Sawyer,” “Heidi” and “Little House on the Prairie.”

“His vocabulary is quite large since he listens to those books on tape from the past,” Suzanne said. Nicky is also gifted in math, which his mother attributes to his talking calculator, one of the few toys she has found that is totally accessible without sight. “He also loves playing store and is excellent at sorting coins tactilely,” she said.

Having a wide vocabulary and knack for conversation makes writing stories a natural fit for Nicky, although his talent makes him relatively rare among blind children. According to the National Federation of the Blind, 90 percent of blind children are not taught to read. This is because there is a dearth of Braille teachers and adequate training. Reading and writing offers Nicky a chance to create all the dialogue he desires without needing somebody else to be present.

The writing contest created by The National Federation of the Blind Writers’ Division is unique because judges score contestants on story content and quality of Braille. This subtle yet important rule forces entrants to be conscious of their Braille and rewards those who have mastered the many contractions used in Braille.

“When you are first learning Braille, Braille looks like a side of a pair of dice,” Suzanne said. “A Braille cell has six spots on it. You have to learn to feel Braille to check your work. As you get older, each letter of the alphabet also has a shorthand contraction. How advanced one’s brailing is based on how many contractions they know, and using those contractions correctly.

“You have to read textbooks in Braille or have people read them aloud to you. Nicky has to pass the same curriculum as any public school kid. At his school, you can’t just have someone read the story for you, so you have to read it in Braille. So learning contractions is paramount.”

One of the most frustrating aspects about Nicky’s blindness is not being able to do the same activities as his brother Jack, 12, and sister Daisy, 10. Jack and Daisy enjoy sports, but Nicky isn’t able to participate in most physical games. One of the biggest problems is that there aren’t enough readily accessible activities for blind people. Many games and activities for young children require supervision and parental support.  For Nicky, being active and independent is an important goal.

“He’s gained a lot of independence in the last nine months,” Suzanne said. “He is now able to walk a great distance without me or his dad leading him by the nose. He swims and is learning to ski and canoe. We don’t help him swim, and he can swim one lap in about four or five minutes.”

“We are all impressed and delighted with Nicky’s creativity and Braille skills,” said Robert Leslie Newman, president of the NFB Writers’ Division. “We are so proud of Nicky,” added Jim Antonacci of Willow Grove, a long-time St. Lucy’s volunteer and president of the NFB of Pennsylvania (42 S. 15th St.).

Nicky will receive a cash prize of $5 and the chance to be published in “Slate and Style,” the quarterly literary magazine of the NFB Writers’ Division: www.nfb-writers-division.net/

Nicky’s taste of writing success has given him a spark to continue. Although he doesn’t have a favorite type of story to write, the general process is rewarding. When asked if he plans to write more stories, Nicky replied, “Oh definitely, like 10 of them!”

Ed. Note: The Local tried to obtain a copy of Nicky’s award-winning story to print in the Local, but we were told it is only available in Braille and can only be read by people who know Braille.

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