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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 with 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.
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.
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.
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
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!
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!
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.
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Anything for a good friend!!
Jonathan Murison
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
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
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.
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