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Illness dims Lockport girl's sight and hearing, but not her adventurous spirit

Annie Leeds had two corneal transplants when she was 4 years old, but severe glaucoma developed, leaving her blind in her left eye and with severely limited vision in her right.

Within months of the cornea transplants, a kidney disorder affected her ability to absorb electrolytes into her bloodstream.

And Annie also lost her hearing at around the same age.

For a while, doctors did not know what was going on with the Lockport girl. It was one bad thing after another.

Annie, who is now 12 and a seventh-grade honors student, is in the fight of her life.

Annie is being treated at Women & Children’s Hospital, which benefits from proceeds from the sale of The Buffalo News Kids Day editions, taking place Tuesday.

She was diagnosed with a severe form of mitochondrial disease, a genetic disorder that is progressive and for which there is no known cure. Mitochondria are part of every cell in a human body. They produce 90 percent of the energy a body needs to function. In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy, and that can affect the eyes, heart, brain, muscles and lungs, and other organ systems.

Annie's story is being told because Tuesday, April 25 will be Kids Day. On that day, thousands of volunteers will help sell a special Kids Day edition of The Buffalo News. The proceeds from the sale of this special edition will benefit Women and Children’s Hospital of Buffalo, Cradle Beach and children in Western New York.

In 2017, The Buffalo News is celebrating its 35th year of raising money through Kids Day. Since 1983, Kids Day contributions have totaled more than $4.6 million – helping children like Annie all across Western New York.

Annie Leeds, 12, who has mitochondrial disease, talks Monday, April 10, 2017, with Dr. Richard Erbe, chief of the Division of Genetics at Women and Children's Hospital. (Derek Gee/Buffalo News)

For Annie, mitochondrial disease has brought extensive muscle weakness, cramping, and gastrointestinal problems as the prevalent side effects. A recent diagnosis that she has Type 1 diabetes further exacerbates her health challenges.

"It's just scary. She loses her vision, and then within three months, she loses her hearing, and her kidney problems. You don't know what's going to be next," said Annie's mother, Libby Leeds, who with her husband Sean have four daughters ranging from 10 to 16 years old.

Sean Leeds has stopped working his commercial truck driver job to stay home and care for Annie while his wife works as a math teacher in the Lancaster School District.

Annie wakes at 5 a.m. on school days. Sometimes she cannot walk due to muscle weakness. "It's like she's an old person in the morning and can't get out of bed," said her mother.

Each morning and evening, Libby Leeds crushes up about 30 different medications so that Annie can take them. Annie also has a daily routine of IVs, and a gastronomy tube inserted into her abdomen is used to deliver food and medications directly to her stomach. A mediport inserted in Annie's chest helps with 12-hour infusions of fluids and electrolytes.

Each morning, there's a two-hour drill of flushing her tubes, administering her medicine and allowing enough time to get her ready for her school day.

That is just part of what Annie, a spunky Akron middle schooler, muscles through each day. She does so in a very brave manner, showing unwavering determination and a clear sense of "fight."

"I just do it. If I can do it, then why not?" said Annie, who enjoys teasing her father, dancing, art lessons and reading. "My sisters help me a lot."

A year ago, cochlear implants were installed in Annie, allowing her to hear.

Her mother says Annie "just deals with the hand she was dealt."

Annie Leeds, 12, of Lockport, is a seventh-grade honor student with mitochondrial disease. She's had to battle near blindness, loss of hearing, a kidney disorder and muscle weakness. (Derek Gee/Buffalo News)

Dr. Richard Erbe, a pediatric professor and chief of the genetics division at Women & Children's Hospital of Buffalo, is Annie's go-to physician. He and at least eight other medical specialists help monitor and treat her disease. Erbe said it took "a couple of years to figure out what was going on" with Annie. But blood work and sophisticated DNA analyses pinned down the diagnosis by the time she was 6 years old.

"Many of her mitochondria were missing a large piece of their genetic material," Erbe said.

In layman's terms, her condition is akin to a battery losing its energy or exhibiting flickering power. The disease zaps the energy the body needs for tissues and cells. The muscle weakness explains why Annie's left eyelid is drooped and her right one is slightly drooped. But Annie does not have cognitive disabilities.

Erbe and Annie's parents say that the scariest part of Annie's condition is wondering what could be next.

"It's very difficult for us to explain this, and people are desperate for therapy," Erbe said. "In mitochondria, they are fighting it out all the time. It depends on which mitochondria win, in which cells. The ones with the deletion, the bad guys, tend to take over. But there are other considerations that we don't fully understand."

Despite her challenges, which often leave her starting her day like a semi-crippled old woman, Annie exhibits an unbridled spirit for adventure and a zest for life. And she loves to tell you how much she loves popcorn and mashed potatoes.

At 4-foot-8, she plays soccer in a recreation league for special needs children and loves to sing and dance. Her favorite "subject" is gym class. She detests math, and delights in pointing out that her mother is a math teacher. She loves English class because of reading but doesn't care for writing essays. She adores playing outside with her sisters. Other favorites include tending a vegetable garden with her grandparents and father, particularly growing corn. She talks endlessly about her "love" of YouTube sensation and rapper MattyB and wants to see him in concert. A blanket with MattyB's name inscribed on it is on her hospital bed in her parents' bedroom. Her Make-A-Wish room in the family's basement contains an air hockey table, craft table, television and popcorn machine.

Her backbone is her family, which cannot take vacations and survives on one income with crushing financial pressure from medical bills.

"You have to carry on. What are you going to do, sit and wallow in your infinite sadness? Because that's not going to do anybody any good," said Libby Leeds. "I think that what keeps you going is the hope of a miracle."

"And you have to look at the good that you have. Annie has inspired people to be better people," she said.

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