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Bigger plans

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Photo by Ron Burkett.

Starting in second grade, Andrew Droste faced a series of learning difficulties. He had a high IQ and could read individual words but couldn’t comprehend them in a sentence. He was diagnosed with a general reading, writing and spelling disorder. But without a specific diagnosis, it was hard for his teachers and parents to determine how to best help him. 

Then in the summer before he started fifth grade at Edgewood Elementary, Dr. Elizabeth Peters, his pediatrician at Mayfair Medical Group, noticed a dark spot on his hand. As it turned out, he had 28 of these café au lait spots on his body, mostly hidden under his clothes where his mom, Ashley Henson, hadn’t seen them. 

“I was astonished,” Henson said. 

From the time he was born, Andrew had a giraffe stuffed animal named Raffie whose spots have now worn off. He and his family joke that Raffie transferred his spots to Andrew.

Soon a diagnosis of neurofibromatosis (NF) would explain both the spots and his learning difficulties. The neurological disorder’s most common type, type 1, affects about 1 in 3,000 people worldwide. It causes developmental changes in the nervous system that vary in each person. Many patients develop benign tumors, and others like Andrew have skin pigmentation and/or learning difficulties. Most people develop symptoms before age 10, but often they appear or worsen during puberty.   

With the diagnosis, Andrew was able to get the help he needed as he entered sixth grade at Homewood Middle School.

HMS special education teacher Andrea McCormack sat down and came up with the tools he needed to be successful. 

Andrew cannot physically write, but with a computer he can type everything he needs to. He can’t comprehend what he reads without audio assistance, but a computer program called SOLO reads his textbooks, papers and books aloud for him. When he was assigned a book that wasn’t available in audio, his older sister Emma read it aloud and recorded it for him on an iPhone. He made a 98 on the project on it afterward. 

“He does not forget anything he hears,” Henson said. 

For the first time, Andrew made the A-B honor roll that year.

“It’s not that he is not intelligent, his brain just does not take in information in a traditional way,” Henson said.

Homewood Middle School was “incredible” in its full support, she said.

Now a seventh-grader, Andrew stays busy with show choir, playing drums in the band, baseball, and singing in the choir and playing hand bells at Trinity UMC. Henson said his self-esteem is high despite the challenges he has faced. 

“He is his own advocate with education,” Henson said. “When he needs help, he tells the teacher. When he is distracted taking a test, he asks to leave the room. He doesn’t see it as a disability. He sees it as ‘my brain is wired a different way.’”

After his diagnosis, Andrew and his family met other local families with NF diagnoses through the Children’s Tumor Foundation. Together, they will walk at Veterans Park this month to raise funds and awareness for NF and its research. There is currently no cure or treatment for NF1 that can reverse or prevent complications, so medical management focuses on early detection of treatable complications.

Andrew’s family has also learned more about how it affects people differently. The disorder is genetic, so most people inherit it from a parent. But Andrew’s was caused by a spontaneous mutation that only affected part of his cells, not all, like most who have NF. 

“I know I’m not as bad as other people, but I want to raise awareness so they can find a cure,” Andrew tells his mom. 

Henson counts everything about Andrew as a gift — his upbeat personality, his diagnosis, how he can now excel at school. They now live a few miles from the leading NF doctors at UAB, just as they were close to the best hospital when a heart-lung bypass machine kept him alive for 10 days after he was born. The Hensons still don’t know if the two medical issues are related. 

“If we had not been in Delaware at that time, my son could have died,” Henson said. “Jefferson Hospital [nearby] was the leading hospital for ECMO machines, and now here we are in Birmingham with the leading NF experts at UAB. God puts us in the right place at the right time… I knew God had bigger plans for him.”

Children’s Tumor Foundation NF Walk

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