Sutton Raye Simmons

Hinesville, GA

Southeast Catastrophic Illness Fund

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Help Hope Live

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In honor of Sutton Raye Simmons

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Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087

Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.

Small but Mighty: Sutton's G-Tube Journey

Sutton came into our lives through IVF, and from the very beginning, she has shown incredible strength. Just two days after birth, she was transferred to a higher-level NICU, where she spent 40 days fighting to grow, thrive, and learn how to eat.

During her NICU stay, Sutton faced challenges with her breathing and feeding. She required oxygen support starting out with bubble CPAP and eventually weaned down to a nasal cannula, and an NG tube was placed to help her get the nutrition she needed. A swallow study later revealed that Sutton has silent aspirations, which meant she was unable to safely drink by mouth. Since then, she has also struggled with bottle aversions.

In addition to these challenges, Sutton was diagnosed with hypotonia, a feeding disorder, GERD (gastroesophageal reflux disease), and a cow’s milk protein allergy. We recently received her Whole Exome Sequencing (WES) genetic testing results, which revealed two variants of unknown significance. We’ll be meeting with her pediatric geneticist soon to discuss what this means and what additional testing may be needed to hopefully find an underlying diagnosis.

On June 30, Sutton underwent surgery for a G-tube placement along with a Nissen fundoplication to help reduce her severe reflux. Today, Sutton depends on:

Multiple daily G-tube feedings

Overnight continuous feeds with an Infinity pump

Medications given through her G-tube

Frequent suctioning and repositioning to prevent aspiration and manage reflux

She works hard in physical and feeding therapy several times each week, and her care is carefully managed by her pediatrician and a pediatric GI specialist. Because of her fragile condition, Sutton requires round-the-clock supervision and cannot attend daycare.

To provide the constant care Sutton needs, her dad has left his job to be her full-time caregiver, and our family is now living on a single income. At the same time, we are managing ongoing medical bills, copays, travel to frequent appointments, and many medical supplies that insurance does not cover.

Through it all, Sutton remains the happiest, sweetest baby. Her courage and resilience inspire everyone who meets her — she truly is small but mighty.

We are fundraising through Help Hope Live to help cover:

Out-of-pocket medical bills and therapy costs

G-tube supplies and specialized medical equipment

Travel for appointments and therapy sessions

Adaptive clothing and daily care essentials

Your support means the world to us. Whether it’s a donation, sharing Sutton’s story, or simply sending love and encouragement, every gesture helps us give Sutton the best care possible.

Thank you for standing with Sutton and our family.

July 21, 2026

Fingers crossed for our GI appointment tomorrow as we get an update on Sutton's plan of care depending on her weight! Hoping she has gained some!

July 4, 2026

Also to add: Today, 7/4/26 marks our year anniversary since we came home from the NICU! Time has flown!

July 4, 2026

Hello everyone!It has been quite a while since our last update in January, and we wanted to thank each of you for continuing to follow Sutton's journey and support our family. Life has been wonderfully busy, and we've been spending every moment we can watching our sweet girl grow.Sutton is now 13 months old, and we're excited to share that she has finally reached a huge milestone—she's now over 18 pounds! Every ounce she gains is something we celebrate because we know how hard she's worked to get here.We're currently in a very slow G-tube weaning trial, and so far Sutton has been doing an amazing job. Her GI doctor started her on an appetite stimulant called cyproheptadine, and we've already seen a noticeable difference. She's showing much more interest in eating by mouth, which has been incredibly encouraging for our family.We'll have another appointment with her GI doctor on the 22nd of this month to see how her weight gain is progressing with the medication, increased oral intake, and our current feeding plan. We're hopeful that she'll continue moving in the right direction.Sutton is still receiving continuous G-tube feeds overnight, but we've also had another exciting breakthrough as she finally found a formula she enjoys drinking by mouth! She's happily drinking Enfamil NeuroPro Toddler, while continuing to receive PediaSure Grow & Gain through her G-tube to help meet her nutritional needs. Watching her become more interested in eating and drinking on her own has been one of the biggest milestones we've hoped for.Outside of feeding, we're still working to find a pediatric home nurse who can help care for Sutton. Having consistent nursing support would allow both her dad and me to work while knowing she's receiving the specialized care she needs. It's been a challenging process, but we're continuing to hope that the right nurse will come along soon.We know this journey is far from over, but we're incredibly grateful for how far Sutton has come. Your prayers, encouragement, and financial support through Help Hope Live have made a real difference in our lives, and we can't thank you enough for standing beside us through every milestone.We'll continue to keep everyone updated as Sutton grows and reaches new goals. Thank you for believing in our little fighter and for being part of her story.

January 8, 2026

Sutton had an amazing first Christmas filled with lots of fun, noisy toys and time spent with all of her family. She is definitely spoiled-I mean well loved! Seeing her surrounded by so many people who care about her meant more to us than we can put into words.Since then, we have continued to make very slow but steady progress in feeding therapy. Every small step forward still matters, and we are holding on to those wins.We did experience a setback recently. Sutton was admitted to the hospital from January 2nd through January 5th due to ongoing feeding issues following RSV. During her stay, she underwent a contrast scan, which confirmed that her Nissen fundoplication is still functioning properly. While we are very relieved to know everything looks intact, we still do not have a clear explanation for the intermittent vomiting she has experienced on and off for several months.It is difficult to feel both grateful that she is stable and frustrated by the lack of clear answers. We are scheduled to follow up with her GI doctor on February 3rd, or sooner if an earlier appointment becomes available, and we are hopeful that appointment will provide more clarity.Thank you for your continued prayers, support, and encouragement!

December 14, 2025

We realized it’s been a little while since our last update on October 29th. Life has been full and busy with the holidays, work, therapies, and navigating Sutton’s ongoing medical needs but we wanted to take a moment to share how she’s doing.Overall, Sutton continues to work hard every single day. She did experience a bit of a setback recently after catching a common cold, which caused significant nasal congestion and made feeding and therapy more difficult for a time. Thankfully, she’s back to pushing forward again, even if progress continues to be slow.We recently switched Sutton to Neocate formula, and she is tolerating it much better. Feeding is still a long journey, but we are making small steps. We are continuing feeding therapy, introducing more purées, and trying Neocate mixed with oatmeal. We’ve also started practicing drinking from a Honey Bear cup to help build her feeding skills.On the developmental side, we finally reached a HUGE milestone as Sutton can now sit up on her own for a very short period of time! This is a big win for her. Rolling is still something she’s working toward, but we remain hopeful and encouraged by her determination.We also finally heard back from the genetics team and have an appointment scheduled for March 2026 in Jacksonville, FL. At that visit, we’ll discuss further testing and hopefully begin to understand the “why” behind the many challenges Sutton has faced since birth and her NICU stay.Before the year ends, we also have our last GI appointment on the 23rd. We’re hoping to switch Sutton’s MIC-Key G-tube button to a longer size especially since our girl is now over 13 pounds! Thank you, from the bottom of our hearts, for continuing to support Sutton, pray for her, and follow along on this journey with us. Your kindness, encouragement, and generosity truly mean more than words can express.

October 30, 2025

It’s been a busy and exciting few weeks for our little fighter. Sutton has been working hard in both feeding and physical therapy, and she recently started VitalStim, an electrical stimulation therapy that helps strengthen her swallowing muscles. This will help her eat more comfortably and efficiently as she continues practicing with her bottle.She’s also trying small amounts of stage 1 baby foods like sweet potatoes and carrots—such a huge milestone in her progress. Each step forward reminds us how strong she is and how far she’s come.We are so thankful for every prayer, message, and act of kindness that has supported our family along the way. Your love and encouragement mean so much as we continue to cheer Sutton on in her journey.

October 12, 2025

October 8 was a big milestone for us as Sutton finally took to a pacifier. This is such a wonderful improvement because it helps with her oral stimulation and marks an encouraging step forward in her G-tube journey. Tomorrow we have a phone call with our genetic counselor to discuss Sutton’s GeneDx genetic testing results. I am feeling nervous but hopeful, trusting that everything will unfold according to God’s plan.

October 2, 2025

We finally got Sutton’s genetic testing results back, but they didn’t give us the clear answers we were hoping for. Two gene variants (PHOX2B & POLG) showed up, but they’re listed as “uncertain significance,” which basically means they don’t point to a definite diagnosis yet. More testing will be needed, and we’re waiting on a call from a genetic counselor to figure out the next steps.It’s definitely not the news we were hoping for, but we’re staying hopeful. Sutton has been working so hard in feeding therapy, and we’re excited for the day she can continue making progress toward eating on her own and eventually being tube-free. This journey comes with a lot of unknowns, but the love and support from family, friends, and this community truly helps us keep moving forward.

October 2, 2025

It has been a challenging week for our baby. On Sunday, September 28th, Sutton was admitted to the hospital due to dehydration, severe vomiting, and difficulty tolerating her feeds. She underwent a repeat swallow study and an upper GI with contrast to check if her Nissen was functioning properly and to see if there was any risk of aspiration while swallowing.We are relieved to share that the results showed no aspiration, nasal regurgitation, or penetration with thin liquids. The doctors did identify an issue with her stomach volume, along with symptoms related to gastroenteritis and lingering effects from a recent COVID-19 infection.Sutton’s formula was changed from Similac Alimentum to Elecare, with adjusted calories per ounce, in hopes that her stomach will tolerate it better. Looking ahead, we are hopeful she will soon advance to oatmeal cereal and begin VitalStim therapy, which will bring new changes and advancements in her feeding therapy. Our ultimate goal is for Sutton to eventually be free from her feeding tube.Every donation helps us navigate these unknown challenges and provide Sutton with the specialized care she needs to reach these milestones. After days of worry and care, we are overjoyed to have our baby girl back home.#StrengthforSutton

September 18, 2025

We are hosting our first fundraiser-Butter Braids for Baby Sutton!We are so excited! Link on page! Also, genetic testing is estimated to result around first week of October so fingers crossed for a good report!

September 11, 2025

As for genetic testing, it is unfortunately still in the works but we are hoping we will receive an answer within the next 2-3 weeks!

September 11, 2025

Hi everyone!We just want to say a huge thank you for visiting Sutton’s page and taking the time to read her story. Russell and I feel beyond blessed to be her parents. Your support—whether through a donation, sharing her page, or simply sending kind words—means the world to us. Every bit of encouragement helps us as we navigate her journey with her G-tube. Health Update: Sutton is making slow but steady progress and now weighs 10 lbs 10 oz! She has a GI appointment coming up next week to talk about possibly increasing her feeding totals, and her team may schedule an earlier swallow study based on what her feeding therapist has observed. Feeding therapy is slowly improving, and we are so excited to share that we finally found a bottle she likes!We’re also working on some fun ways to support her journey—t-shirts, stickers, and more for her first fundraiser are in the works. Stay tuned for details soon!Thank you again for being part of Sutton’s story. Your support brings us so much hope.

January 8, 2026

Sutton's 2nd Hospital Stay :(

October 30, 2025

Therapy Progress

October 1, 2025

Sutton's 1st Post NICU Hospital Stay

August 28, 2025

Sutton

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September 12, 2025

We are praying for sweet baby Sutton and your family. We love y’all.
“For we walk by faith, not by sight,”
‭‭2 Corinthians‬ ‭5‬:‭7‬ ‭

Fran Boynton

September 11, 2025

You’ve shown such strength through everything, and it’s inspiring to everyone who knows you. Please remember you’re not walking this road alone—so many of us are standing with you, cheering you on, and ready to support in any way we can.

Brea Wiggins

Mail a Check

Make checks payable to:
Help Hope Live

Note in memo:
In honor of Sutton Raye Simmons

Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087

Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.

Small but Mighty: Sutton's G-Tube Journey

Updates (12)

July 21, 2026

July 4, 2026

July 4, 2026

January 8, 2026

December 14, 2025

October 30, 2025

October 12, 2025

October 2, 2025

October 2, 2025

September 18, 2025

September 11, 2025

September 11, 2025

Photo Galleries (5)

January 8, 2026

October 30, 2025

October 1, 2025

August 28, 2025

August 28, 2025

Guestbook

September 12, 2025

September 11, 2025

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Share Sutton Raye Simmons's Page

Small but Mighty: Sutton's G-Tube Journey

Updates (12)

July 21, 2026

July 4, 2026

July 4, 2026

January 8, 2026

December 14, 2025

October 30, 2025

October 12, 2025

October 2, 2025

October 2, 2025

September 18, 2025

September 11, 2025

September 11, 2025

Photo Galleries (5)

January 8, 2026

October 30, 2025

October 1, 2025

August 28, 2025

August 28, 2025

Guestbook

September 12, 2025

September 11, 2025

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