A Grandmother’s Journey: Recognizing, Advocating, and Innovating for Isla’s Future
By Tamela Rystrom, CEO of MillarRich

As a professional in the field of disabilities for over 30 years, I’ve spent my career advocating for early intervention, pushing for resources, and ensuring individuals receive the support they need. But when the person needing advocacy is your own grandchild, the landscape shifts. It becomes personal in a way that no professional experience could ever fully prepare you for.

My granddaughter, Isla, is not yet two years old. She has been diagnosed with two rare genetic duplications—22q11.2 and 14q11.2 mosaic—conditions so uncommon that even experienced genetic specialists have limited information on what they mean for her future. This is our story of recognizing the signs, pushing for answers, and leveraging technology to give Isla the best possible foundation for life.

A Gut Instinct That Wouldn’t Let Go
From the moment Isla was born, I noticed things that didn’t seem quite right. Her eyes had rapid, involuntary movements—a condition called nystagmus. That was the first red flag. But beyond that, there were subtle clues: the way her saliva built up in her throat, how she wasn’t developing verbal skills at the pace of most babies, and the small but persistent differences in her movements and responses.

As a grandparent, my first instinct was to hope I was wrong. As a professional, I knew I had to act. It took six months to convince my daughter, Darby, to pursue genetic testing. I understand why—no parent wants to believe something might be wrong with their child and the things I was seeing were subtle and could be easily explained away by the often common response of  “all children develop at their own pace.” But I also knew that if I was right, early intervention could be the difference between Isla receiving the right support at the right time or struggling unnecessarily.

When the results came back, it was both a shock and a relief. Shock because these genetic duplications are incredibly rare, and relief because at least now we had some direction.

The Challenges of a Disjointed Medical System
You’d think that after receiving a diagnosis, there would be a clear roadmap. That someone would hand you a list of specialists, therapies, and next steps. That’s not how it works.

Instead, we found ourselves navigating a fragmented system. Isla saw an ophthalmologist for her eyes. A gastroenterologist for feeding issues. A neurologist for developmental concerns. A cardiologist for additional tests. But no one was piecing the puzzle together.

At times, it felt like we were just going from one referral to another without a clear picture of what it all meant. It wasn’t until we started actively advocating for Isla—connecting the dots ourselves, pushing for further tests, and seeking second opinions—that we began to understand the full scope of what she was facing.

 One surprising moment in this journey was when Isla’s genetic specialist used AI-driven medical databases to analyze her symptoms. This technology is meant to match symptom patterns with known disorders, but in Isla’s case, the results were inconclusive—her condition was just too rare. This highlighted a larger issue: when dealing with rare disorders, parents and caregivers often have to become their own medical researchers, constantly seeking out the latest advancements and best possible care.

Turning to Technology for Answers
As Isla has grown, new challenges have emerged. One of the most difficult has been her inability to sleep through the night. She averages only four to six hours of sleep, often waking up distressed. The question that loomed over us: Was this a behavioral issue, or was there an underlying medical cause?

This is where my work at MillarRich intersected with my role as a grandmother. At MillarRich, we’ve been expanding our Enabling Technology Program—an initiative that helps individuals with disabilities use technology to improve their daily lives. One of the devices our team was researching was the Xander Kardian, a non-contact, radar-based monitoring system designed to track vital health data, including sleep patterns, respiratory rate, and micro-movements.

It occurred to me: What if this technology could help Isla? What if we could collect real-time data about her sleep and identify patterns that could lead to medical insights?

So, today, we are installing the Xander Kardian device in Isla’s room. We’ve assembled a care team that will monitor the data and collaborate with her doctors to determine whether there are underlying medical concerns contributing to her sleep difficulties. This approach is not just about Isla—it’s about exploring how technology can help families like ours gain insights that might otherwise take years to uncover.

Advice for Parents and Grandparents Facing Similar Challenges
If you suspect something is different about your child or grandchild, trust your instincts. Here’s what I’ve learned along the way:

1. Don’t Wait and don’t be afraid to be wrong. Parents often worry they will appear crazy if they suspect something, push for testing and the results show there is no issue.  In these cases, it is better to be wrong and assured that everything is okay, than to be right and have delayed potential interventions due to self-doubt or fears of how you may be perceived by others.  Early intervention matters. The sooner you begin looking for answers, the more options you’ll have. 

2. Advocate Relentlessly. Navigating the healthcare system is difficult, but persistence can make a difference. Keep pushing for tests, referrals, and second opinions.

3. Embrace Technology. From genetic testing to AI-driven diagnostics to non-contact health monitoring, advancements in technology can provide insights that weren’t possible even a few years ago.

4. Build a Support Network. You can’t do it alone. Lean on medical professionals, therapists, advocacy groups, and other parents who have been through similar experiences.

5. Focus on Possibilities, Not Limitations. Isla’s future is unknown, but that doesn’t mean it isn’t bright. Every child is unique, and with the right support, they can thrive in their own way.

Looking Ahead
This journey is far from over. We are still learning what Isla’s diagnosis means for her future. We are still finding ways to support her growth, development, and health. And now, we are exploring how technology can play a role in improving the lives of children with rare diagnoses.

Through it all, one thing remains certain: we will never stop advocating for her.If you are a parent, grandparent, or caregiver facing similar challenges, know that you are not alone. Keep pushing. Keep asking questions. And never underestimate the power of love, determination, and innovation.

This is just the beginning.