On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list for her daughter, Macy. Macy lives with Rett syndrome and Samantha, like all families with a loved one with Rett, must keep meticulous records of health documents to ensure the best possible care for her child.
Samantha used to toggle between several apps to manage Macy’s care. Now she uses one: My Rett Ally.
“As sharp as I can be, life still happens,” Samantha said, recalling the overwhelming amount of information required just to check-in to the emergency room with Macy. “Before My Rett Ally, I had different apps for everything – from seizure trackers to a GI tracker. Now, on a visit to the ER, I can pull up Macy’s medication list, hand it over to the nurse, and go back to what is most important at that moment: being there for my child.”
As the Family and Community Engagement Manager for IRSF, Samantha is often the first person at the foundation that families talk to after they receive their diagnosis. She is always looking for ways IRSF can make families’ lives easier on a daily basis. So when she learned about the web-based application, mejo, which was designed to streamline medical records for families with complex medical conditions. Samantha wanted to take what mejo had created and tailor it specifically for Rett families. A partnership was born and together with mejo, IRSF launched My Rett Ally in July 2023.
“My Rett Ally is the place to record all those special little intricate details – like the fact that you give your child her seizure medicine with chocolate pudding – that you’re never going to see on a medical chart,” Samantha said. “An app like this didn’t exist and now it does thanks to our beta testers, mejo, and our dedicated IRSF team.”
In addition to tracking medication, My Rett Ally allows parents and caregivers to keep records of everything from emergency contacts and immunizations to dietary restrictions and useful health information. There is document storage available for things like genetic results, notes from medical visits, insurance cards, or IEP information. That information can then be shared with the individual’s care team. The web app is intuitive and all-encompassing, eliminating the need for binders of paperwork and logins to multiple portals. It’s also completely free.
“One of my favorite parts of the app is the tracker,” Samantha said. “This is a big bonus for Rett families. I am often asked things like: when was the last time your child had medication/had a seizure, etc.? The app allows me to track those things. It matters if a med dose was accidentally not given. It matters how long that seizure was. It matters that you know when your child had their last stool or had a belly ache. My Rett Ally puts you in control of all your child’s information so you can get them the best possible care.”
Rett mom, Katy, initially dismissed the app because of her lack of technical aptitude. But after listening to a podcast about mejo and discussing the benefits of My Rett Ally with her husband, she decided to give it a shot. Information can be entered into the app as you go, so Katy and her husband decided to import information for their 24-year-old daughter, Bea, periodically over the course of a weekend.
“I have to admit there was a bit of work involved but the outcome was phenomenal,” Katy said. “My most favorite part of the app would be having Bea’s routine all written down. So, if something was to happen and an individual had to come and pick up where I left off, it would be right there in their hands.
I use the app most frequently to re-order supplies and for doctor’s numbers. My previous way of keeping all these documents and numbers together was very helter-skelter, to say the least. No one would’ve ever understood my crazy filing system. This has been an amazing help – puts my mind at ease.”
Samantha hopes that others will follow Katy’s lead and utilize the app in a way that fits their needs.
“Learning that your child has Rett syndrome is absolutely overwhelming,” she said. “When I get to speak with a family who has just had their world flipped upside-down, anything that I can do to provide a little comfort in that situation is useful. Being able to present My Rett Ally as a tool that they can immediately implement and have complete control over has been a game-changer.”
Interested in learning more about the web-based app or creating an account for a Rett warrior in your life? Learn more at rettsyndrome.org/myrettally or visit myrettally.mymejo.com and click on “Let’s Get Started!” to sign-up for free. It just takes a few minutes to get your account created.
About mejo from co-founders, Bret Koncak and Ryan Sheedy
There are more than 300 million people in the world living with a rare disease. More than half are kids. We are proud fathers to three kiddos impacted by rare disease.
We know that as caregivers to rare and medically complex children we must become the experts in their diagnosis/condition. When our sons were first diagnosed, there wasn’t an all-encompassing place where we could keep track of everything related to their care.
The mejo app was created to be just that. Nothing to download and accessible on any device, this app was designed to be there whenever and wherever it was needed.
It’s been an honor to collaborate with IRSF on a Rett-specific platform, My Rett Ally. Hearing from early users who have called the app a “life-changer” means everything to our team. Being a caregiver isn’t a full-time job. It’s an everyday job. We hope that this app continues to help many families provide the best possible care for their loved one.