Born without eyes and with several other challenges, Evely Diaz was always going to have an extraordinary story. Her mother, South Carolina singer and not-for-profit founder Tameka Simmons – alongside Evely’s sisters, Luna and Skye – shares how tube-feeding plays a supporting role for their family.

Evely got her feeding tube at three months old.

It was during what ended up being a 30-day hospital stay battling heart failure and, initially, the G-tube was recommended to give her an opportunity to rest and heal from multiple life-saving heart procedures.

Her heart wasn’t well at all – and something as natural as breastfeeding was such hard work for her during that time. The tube allowed her to get the necessary nutrition and hydration without exerting herself, which was crucial for her recovery and overall health.

I was just grateful and excited for any intervention that would allow Evely to come home.

At first, I saw the G-tube as a temporary measure to give her heart the opportunity to rest, expecting she would eventually resume nursing and start solid foods months later. Evely progressed well with oral feeding, leading to the removal of her G-tube button. However, shortly afterward, she began experiencing seizures and regressed in her skills.

Evely was diagnosed with a rare form of epilepsy and other conditions that made oral feeding not only challenging, but unsafe.

When the G-tube was placed again, it hit me hard.

There was a lot of grief and overwhelming feelings because breastfeeding gave me confidence she was getting what she needed. As she grew, finding the right nutrition for Evely was also incredibly challenging.

The standard commercial formulas recommended by hospitals didn’t align with our family’s lifestyle or values. It felt unsettling to feed her something I wouldn’t choose for my other children. So I started blending meals for her myself, which was both expensive and time-consuming.

Then, during a late-night Google session, I discovered Real Food Blends. This was a game-changer – a whole-food option made with real ingredients that I felt good about feeding her, knowing it would contribute to her healing and growth.

Tube-feeding was incredibly overwhelming at first.

And messy, too! I remember feeling so anxious and sometimes I would even hear phantom beeps from the feeding pump. That feeling still comes back occasionally, but once I found reliable meal options that I felt good about feeding Evely, things started to get a lot easier.

Over time, managing her feeding schedule and ensuring she gets the hydration she needs has become second nature to me. I’ve gotten so used to it that I rarely need alarms to remind me anymore.

I’ve connected with a supportive community.

Families navigating similar journeys who we’ve met through our family’s not-for-profit, Through Evely’s Eyes, which supports children with rare medical conditions.

The best piece of tube-feeding advice I’ve received from fellow parents is to trust my instincts and advocate fiercely for what works best for Evely. Every child is unique and finding the right nutrition is a journey that requires patience and persistence.

Sharing meals is an important part of our family life.

And we make sure Evely is always a part of it, whether through her specialised feeding routine or by including her in the mealtime atmosphere.

Evely’s sisters have been incredibly involved and supportive in her tube- feeding journey. Luna and Skye have grown up knowing this as a normal part of our family’s routine.

Luna, being so young when Evely became a G-tube user, doesn’t remember a time before it, while Skye was born into this experience. They both show genuine interest and love helping Evely with her tube feeds. It warms my heart to see their natural empathy and care for their sister.

One thing this journey has taught me is the importance of being adaptable.

My primary hope is for Evely to reach her full potential, whatever that may look like. I’m prepared to support her in whatever way she needs, whether that involves continuing with tube-feeding, transitioning to oral feeds if possible, or exploring other options. My goal is to ensure she has the best nutrition and support to thrive in every aspect of her life.

5 minutes with Evely’s sisters, Luna and Skye

Why does your sister Evely have a feeding tube?

Luna: She has diagnoses that make it hard for her to swallow food and drink like we do. Her feeding tube helps her get what she needs.

What’s your favourite thing about Evely’s feeding tube?

Skye: My favourite thing is helping to prime her food. It’s fun to watch it go through the tube. It looks like the food is on a rollercoaster!

Can you tell us about a time where things got messy with Evely’s tube-feed?

Luna: One time, Evely accidentally pulled her feeding tube out while she was eating, and food went everywhere! It was kind of funny, but also really messy.

What advice do you have for other siblings of someone who tube-feeds?

Luna: I would tell them it’s okay to ask questions if you don’t understand something about the tube. And always be gentle around the tube so it doesn’t get pulled or hurt them.

Skye: I would say it’s nice to help out when you can, like priming the tube, but also to just play and have fun together.

Soul Sisters