The world can look like a lonely place when you first learn that Fragile X runs in your family. That is why one of the first things we tell people who receive a diagnosis is “You are not alone.” And it’s your donations that help us to foster real relationships that help our families cope with the daily struggles of Fragile X.
Sarah Friesth can attest to that. Sarah is a farm girl from Iowa who moved to Chandler, Arizona, 10 years ago with her husband Doug. She has two sons: Tate and Trek. While Tate is a typically developing boy, his younger brother Trek lives with Fragile X syndrome. Trek takes after his mother: he exudes friendliness, and has stark blonde hair and an amazing smile. You immediately want to hug him as soon as you meet him. Sarah shows a lot of pride in him. Her bubbling personality and can-do attitude toward helping others goes a long way in her career as a grade school teacher.
It wasn’t always this way, though. On March 26, 2012, shortly before Trek’s second birthday, Sarah learned that Trek had Fragile X syndrome. Like many mothers in the Fragile X community, she was overcome with a tremendous amount of guilt. Not knowing what to do, or where to start, Sarah sat on the bed and literally pinched herself. She wasn’t dreaming; Fragile X was a reality.
Sarah knew she couldn’t sit and do nothing forever, so she did what many parents do: She went online to learn about Fragile X.
“I found your website,” she told us. “Usually, you see the gloom and doom of things. But on fragilex.org, I found stories of families celebrating the uniqueness and wonderfulness of Fragile X in their lives.”
Sarah wanted that feeling, too. She needed to find someone who she could speak with. That weekend, she browsed the NFXF Community Support Network and found Ashley, CSN leader of the Fragile X Families of Phoenix. Her phone conversation with Ashley changed her life.
Ashley, another mother with a positive personality and eagerness to help, was exactly what Sarah needed.
Ashley Nuesse and Sarah Friesth
“After talking to her, I realized my world was a lot bigger than I originally thought,” Sarah noted. Ashley gave her the feeling that she wasn’t alone. There was a network of people out there that could help. Ashley shared her own stories about her son, then put her in contact with other members of the Fragile X community on Facebook.
“Things began to become okay,” Sarah said as she smiled. She sounded as if recounting those precious moments relieved her of the stress all over again. Since that day, Ashley and Sarah have stayed in touch. In fact, over the years they’ve developed a strong friendship. Sometimes they leave the children at home (with their dads!) to enjoy a night out together.
Your Donations at Work
To all our donors, you can be proud that your contributions benefits one of the strongest volunteer support networks in the nation: the NFXF. Through your generous donations, this group of of dedicated volunteers receive the training and tools they need. That is why they are happy to help, why people like Sarah can get to know CSN leaders like Ashley so well and grow their community network.
These relationships are the backbone of our community; we know these connections are what helps many parents feel hopeful and supported in their daily lives. Thank you for helping make this happen!
How Regional Leaders Helped Ashley Organize Her Very First Event
Your contributions go a long way to helping people like Sarah through our ever-strengthening NFXF Community Support Network.
With the help of CSN regional leaders like Laureen Majeske (Michigan) and Missy Zolecki (Chicago), the two Arizona groups organized fundraisers for an educational event held last December. Our CSN regional leaders are part of a newly implemented system to pass on a wealth of knowledge and experience.
That same CSN leadership you helped cultivate gave our two groups the knowledge and confidence to put on a successful educational event. Ashley, who had never organized an event like this before, ended up with rave reviews!
In fact, Sarah told us that Trek’s therapist came up with new strategies and ideas immediately after attending the educational event!
From the bottom of our hearts, thank you for your donations. They give families the confidence they need to live successful lives and professionals the strategies they need to help our families.
If you’d like to help other families like Sarah’s, please donate today!