Caring for Ella: A Rett Syndrome Story of Love and Growth

Written by: Beth Farnum

On December 1, 2007, our world changed. Our daughter Ella, then 3 ½, was formally diagnosed with Rett syndrome. We had just moved from Colorado to Oregon and were starting over with new doctors and therapists. After months on waitlists, the diagnosis finally came. Our younger son was about to turn one, and we felt as though life had been turned upside down.

Like many families, we coped in different ways. My husband Bill jumped in feet-first, IRSF conferences, Stroll-A-Thons, even serving two terms on the IRSF Board. In 2008, he started a nonprofit, Casting 4 a Cure, using fly-fishing tournaments to raise money for Rett research and family support.

I threw myself into the day-to-day: navigating doctors, early intervention, therapy, and the rollercoaster of Ella’s regression period. She was fast, lightning quick and her anxiety made even something as simple as grocery shopping feel overwhelming. Being a parent and caregiver is something I never envisioned for my life. Later, medication helped ease her anxiety, and with love from her brothers, teachers, and caregivers, Ella blossomed.

Today, Ella is 21. She loves animals (especially our dogs Roxy and Archie), family gatherings, and even got to swim with dolphins in Hawaii. She is smart, social, and hopeful with dreams just like any other young woman. As parents, our role is to help her live those dreams while navigating the unique challenges Rett brings.

How Rett Shaped Our Family

Rett syndrome has taken away some opportunities, but it has also brought unexpected gifts. Casting 4 a Cure introduced us to a community that feels like family. Our two sons, Alex and Owen, grew up surrounded by people who understood Rett, and the experience shaped their compassion and character in profound ways.

But being a Rett caregiver is also lonely. While many of our peers are empty nesters, we still plan every outing around Ella’s needs. Evenings can mean 90-minute routines just to get her ready for bed. Exhaustion is a constant. And yet, we wouldn’t trade the lessons Rett has taught us about resilience, love, and perspective.

The Tool That Helps Us Keep It Together

For years, I felt like I was drowning in paperwork, phone calls, and explanations. Every new doctor, every new caseworker, every new support staff member meant starting from scratch.

Until we found My Rett Ally (MRA). It has changed the way we manage Ella’s care.

Top 10 Ways to Use My Rett Ally

1. Share Your Child’s Story Instantly- Skip the endless forms. Share your child’s profile with new doctors, therapists, or school staff in minutes. Everything they need, all in one place.

2. Keep Medications Up to Date- Log medications, doses, and changes in the journal so you always have the most current list ready for appointments, emergencies, or school nurses.

3. Simplify Emergency Room Visits- No more trying to remember every detail in a stressful moment. Print or share your Rett Ally profile with the ER team so they understand your child’s history and needs immediately.

4. Smooth Transitions Between Doctors- Moving from pediatric to adult care? MRA makes onboarding new providers seamless with accurate, organized information. See below.

5. Train New Caregivers with Confidence- Whether it’s a new personal support worker, babysitter, or respite provider, give them a copy of your Rett Ally profile so they feel prepared from day one.

6. Advocate at School- Provide teachers and administrators with your child’s profile, including therapies, communication needs, and Rett-specific information. It sets the tone for partnership and support.

7. Manage Medicaid, Insurance, and Service Plans- Stop rewriting the same details for forms and caseworkers. Share your Rett Ally profile, and they’ll have what they need to build care plans quickly.

8. Track Symptoms and Events- Use the journal to note seizures, GI issues, sleep challenges, or therapy milestones creating a real record you can bring to appointments.

9. Keep Everyone on the Same Page- From spouses to grandparents to respite workers, sharing the Rett Ally profile ensures consistency in care and less stress on you.

10. Feel Organized (Even on the Hard Days)- Sometimes the biggest gift is peace of mind. With My Rett Ally, you walk into meetings, appointments, or emergencies prepared, confident, and ready.

Recently Ella's primary care provider updated their medical records system and they asked to schedule some time so they could ask me a bunch of questions with regards to her care. I said "how about I just email it to you". I downloaded Ella's journal and sent via email. They were amazed how much detail was in just a few pages. It saved us both so much time. And they were able to get info that's not in her chart. CSV file is also available.

Why I Recommend My Rett Ally to Every Rett Family

If you’re reading this and haven’t set up your My Rett Ally yet, my advice is simple: Do it. It takes a little time upfront, but the payoff is enormous. Less stress. More confidence. And the gift of being able to focus more on your child, not the paperwork.

Rett changes everything, but MRA makes navigating the care journey just a little easier. And sometimes, that makes all the difference.

-mejo is honored to collaborate with the International Rett Syndrome Foundation on My Rett Ally. For more information on bringing mejo to your community, send us and email at contact@mymejo.com