GRAND RAPID, Mich. — At just 26 months old, Grace Visser was diagnosed with Rett Syndrome, a rare genetic disorder that affects brain development.
Grace and her family have faced a journey filled with uncertainty and challenges, but they approach it with remarkable resilience.
Rebecca Visser, Grace's mother, described the emotional impact of the diagnosis, "You plan what motherhood is going to look like, and what you’re going to give your daughter, and you want to give them everything and more. It's like, the rug was pulled out from under us," she said.
Rett Syndrome affects one in 10,000 girls and 1 in 1 million boys. Early signs include developmental delays in motor skills, communication abilities, and hand movements.
Rebecca and her husband began to notice these signs when Grace was about 7 or 8 months old.
"When we found out about Rett Syndrome, I was alone. I had never heard of it before. I didn't know where to turn," Rebecca said.
It took her months to fully understand the implications of Grace's diagnosis, and to adjust her expectations.
"It’s just the things that I wanted to give her, and now I realize I’m giving her something a lot different," explained Visser.
Grace has found hope, through movement.
"She is one busy girl. I keep her busy. Occupational therapy, physical therapy, speech therapy, horse riding therapy, aquatic therapy, music therapy. We have people in our home all the time," Rebecca explained.
On top of all that, Grace attends pre-kindergarten part-time and has regular medical appointments and tests.
Her days are filled with both activity and purpose, which she reminds Rebecca of daily, communicating things like, "I am brave" and "I am smart", on her Tobii Dynavox— a communication device that reads Grace's pupils, signifying on a tablet, what it is she would like to say.
While there is currently no cure for Rett Syndrome, progress is being made.
In 2023, the FDA approved the very first drug for the condition, called Daybue, developed by Acadia Pharmaceuticals.
Grace has been on Daybue for almost two years, and while there have been improvements, the search for a cure continues.
"Most rare diseases are not federally funded for research," Rebecca noted.
Fundraising efforts, including donations to organizations like the Rett Syndrome Foundation, are crucial for supporting research.
"We raised over $100,000 in our first gala in 2022, and now we’re on our third," Rebecca added.
Overall, they have raised more than $300,000 in the last three years through various events.
Raising awareness for rare diseases through honoring days like Rare Disease Day, is equally as important as fighting for a cure, according to Rebecca.
"Without that, parents feel like they’re on an island. I mean, who do I talk to? I didn’t know who to talk to," she told us.
In an effort to raise additional awareness, and provide support for other families dealing with rare diseases, Rebecca accepted the role as Executive Director of Lori's Voice, a local nonprofit with a mission to serve children with neuro-developmental and neuro-degenerative disorders by providing medical equipment and services that insurance doesn't cover.
The nonprofit is widely known for their Accessible Van Giveaways, but also provides other resources to help children with rare diseases live a less restrictive life.
Along with her journey at Lori's Voice, Rebecca emphasized the value of connecting with other families facing similar challenges, and that having a solid support network can serve as the backbone of helping turn difficult journeys into beautiful experiences.
"I feel more blessed to be her mother with a diagnosis than I ever realized I could. You turn to faith, and you hope, and you worry, but at the end of the day, every single moment is a gift. I wouldn’t trade anything about her for the world," Rebecca said.
Grace and her family's mission continues, ensuring that no child with a rare disease feels alone.
If you would like to get involved in spreading awareness for rare diseases, or to learn more about Rare Disease Day, you can find additional information by following the link here.
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