Norah walks the Pieterpad for her sister Emmelie who has an eye disease
ADOA probably means nothing to most Dutch people, but for the Van Dam family from Ede, it plays a major role in their daily lives. Ten-year-old Emmelie has the rare eye disease, as do her mother and grandfather. Her sister Norah (13) is now taking action. "I really want to do something for my sister."
First things first. ADOA is a hereditary condition in which the optic nerve gradually becomes damaged, leading to progressively worsening vision. Unlike her mother, Emmelie has been diagnosed with the plus variant.
In this form, other nerves in the body are also affected. "It's not just your vision that gets worse," Norah explains. "But hearing, balance, and movement also deteriorate. You see that with Emmelie as well."
How ADOA-plus develops varies greatly from person to person. For some, symptoms remain relatively mild, while for others, the disease can lead to severe vision and hearing loss and significant movement problems.
Emmelie's mother, Marjanne, says the first signs of ADOA were visible at a young age. "Her motor skills were poor, she tired easily, and her vision deteriorated."
After extensive testing, the diagnosis came: Emmelie appears to have the same genetic defect as her grandfather and mother, who also discovered they had ADOA later in life. Emmelie was diagnosed when she was nine years old.
Everything takes extra energy
In daily life, this requires many adjustments. Emmelie can't walk long distances and gets exhausted quickly. "She always has pain in her legs," says Marjanne. "That's why we use a wheelchair for longer distances."
Additional support is also needed at school. Emmelie uses assistive devices to read and work and cannot participate in physical education. Rest periods are essential to keep the school day going.
"Everything takes more energy than the average child," her mother says. "Even seeing. With her glasses, she can only see 50 to 70 percent, and that can't be corrected."
At home, she mainly needs to recharge. "After school, Emmelie has little to no other activities," says Marjanne. "Otherwise, she wouldn't be able to make it through a school week."
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Norah van Dam (right) will walk the Pieterpad to raise money for the eye disease ADOA, which also affects her sister Emily (left). © Herman Stöver
I don't know any better
Emmelie herself deals with her illness in a down-to-earth way. "I don't know any better," she says. According to her mother, she focuses primarily on what she can do. "We always say: 'If something doesn't go as it should, we'll do it the way it is.' That gives her peace of mind, although Emmelie sometimes gets upset when she can't do certain things."
Norah sees the impact of the disease on her younger sister every day. That was the motivation for her to take action. "I'd actually wanted to do something to raise awareness for people with ADOA for a while," she says. "But at one point I thought: I really want to do something for Emmelie."
Support from all corners
That's why, starting January 31st, Norah will be lacing up her hiking boots to hike the Pieterpad. She hopes this initiative will raise money for ADOA research. She'll walk a total of 500 kilometers, from Pieterburen to Maastricht. She won't complete the route all at once, but in stages spread over several weekends.
Originally, she was going to do all the walking with her father, but he broke his leg at the end of December. "That's really unfortunate, of course. I had to adjust a bit, but we're approaching it differently now."
Family, friends, and acquaintances are ready to support Norah. "Many people are walking small distances with her. Some even complete entire stages," she says. Others are providing transportation, for example.
Donation campaign
Norah has for her hike a donation campaign established. She wants to use the money to contribute to research into ADOA, for which there is still no treatment. Medications that can stop or slow the disease are not yet available.
The campaign is receiving a lot of support. The initial target of €2.500 was already reached early last week. The next target is now €5.000. "This amount will go 100% to research," emphasizes mother Marjanne.
"It's wonderful to see how many people want to help," says Norah. "There's no medication for ADOA yet. That requires funding. With my campaign, I want to help."
This interview appeared on January 20 in Vallei & Rivierenland and on January 22, 2026, on the website of De Gelderlander.
Text: Daniël Dellink
Photo: Herman Stöver
