The North Texas Chapter of the Make-A-Wish Foundation recently made a little girl’s dream come true by creating an accessible area to play in outside in her back yard.
Littlefield’s Stella Duran has been battling a genetic condition called Spinal Muscular Atrophy (SMA), which causes worsening muscle weakness. The condition has also left her bound to a wheelchair making certain things challenging to do.
Stella was born on August 21, 2020, to her parents Michael and Olivia Duran.
“One of the hardest parts about giving birth during COVID-19 was not being able to have the support of loved ones physically there with us,” Duran said. “And this goes back through all of the OB appointments prior to delivery day. We weren’t allowed any one extra in the appointments/ultrasounds. So not being able to experience seeing the ultrasounds or hearing the heartbeats with my husband was a very emotional time for us. We were very fortunate though when it was time for our c-section, Michael could be in the delivery room/hospital room with me so that was a huge blessing to be able to have him there and get to experience bringing our second daughter into this world.”
She added, “We both had to do extra COVID-19 testing leading up to our delivery day. It was bittersweet once after daughter arrived and there was no family in the waiting room patiently waiting her arrival. No one could come and see us or be with us. Her big sisters first look had to meet her over face time since we couldn’t have any visitors. I say bittersweet because as much as we hated not having all our family there to welcome our new baby, it also gave us some time just the three of us to bond together and adjust to our new baby girl.”
During the early stages of her life, she began to grow and was hitting milestones that every baby hits as they begin to grow, but things took a sudden turn around her turning five months old.
“We started noticing things Stella use to be able to do that she could no longer do,” Olivia Duran, Stella’s mother explained. “She could no longer hold her head up during tummy time, she could no longer lift her legs off of the ground, if you sat her in her bumbo chair she could no longer keep her head up and she could no longer could hold up her bottle.”
She added, “Friends and family told us she’s just delayed a little, she’ll get there, but as her mom and dad we knew there was something more serious going on.”
In February of 2021, the Durans met with Stella’s Pediatrician, Dr. Amanda Masters for her six month well check and without hesitation she began running all the necessary tests that she could while they waited to get her into an appointment with a neurologist.
“Stella began working with a physical therapist to try and help her get some of her strength back,” Duran stated.
A few months went by and Stella’s neurology appointment finally arrived in June of 2021.
Duran explained that they spoke to Neurologist, Dr. Scott Perry, of Cook’s Children’s Hospital, about Stella’s history and he did his initial exam.
“At this point, we still had no answers as to what was happening with our daughter,” she said. “The pediatricians test had all came back normal and the neuro team was ready to take the next step and begin genetic testing.”
She added, “Our initial reaction was really a split result. You feel that sigh of relief that Stella’s MRI of her brain came back clear, but you are still frustrated because you still have no answers as to what is going on with your child. We tried to google Stella’s symptoms in the beginning, but we ended up telling each other to stay off of google because the more symptoms we would google, the worse the diagnosis’ kept coming up and we didn’t want to believe that our baby girl we had prayed so hard for was dying right in front of our eyes.”
Duran stated that another month went by with Stella now 10 months old, and they finally got the call on July 13, 2021, that would change their lives forever.
The Dr. Warren Marks proceeded to go over the genetic test results with the family, letting them know that Stella’s results showed that she has Spinal Muscular Atrophy (SMA). He explained what exactly SMA was and that based on Stella’s onset of symptoms and the number of backup copies she had, she was diagnosed as a Type 1 -being most severe. SMA Type 1 patients were not typically able to live past their second birthday but Dr. Marks was hopeful for Stella.
“I think we were both really shocked and in disbelief when we got the diagnosis the first day,” she said. “But, because things had to move so quickly since she was regressing so fast and we were told time was of the essence, there wasn’t a whole lot of time to really process to much of it.”
She added, “We put our faith and trust in the team of doctors we were seeing and prayed like crazy that everything was going to be OK.”
Dr. Marks went on to tell the family that there is no cure for SMA, but their are treatment options available that would be a possibility for Stella.
“The one that was pushed for her to get first was a gene therapy called Zolgensma, which is a onetime dose with a purpose of hoping to stop the progression of SMA by replacing the missing or non-working SMN1 gene by delivering a new, working SMN gene to the body’s cells with a single infusion,” Duran explained. “We didn’t have much time to do any research on the available drugs because as our Neurologist put it ‘time was of the essence’ and Stella was continuing to lose muscle every single day while we waited.”
Duran stated that they agreed upon Zolgensma and all the necessary tests were performed leading up to her dosing day as well as the dreaded insurance approval.
“We had heard that many families had quite the fight with their insurance company on getting approval for Zolgensma,” she said. “Luckily after a couple of weeks went by, our Neuro team called and said that they got the approval needed from insurance and it was time to schedule Stella’s dosing day, which was just shy of Stella’s 1st birthday.”
Stella received her “designer genes” in one single IV infusion on August 5, 2021.
“Almost immediately after infusion day, we noticed Stella’s voice had gotten louder and her cry was louder which was a very good sign that the treatment was working,” she explained. “Throughout time since the infusion, Stella started hitting some small milestones that doctors prepared us for that she may never hit having this disease.”
She added, “Each day Stella gets stronger and has hit milestones such as being able to sit up, raise her hands up, rolling over, pick up snacks/utensils and trying to move her legs more.”
Since getting her infusion in August of 2021, Stella has had numerous specialist appointments she has had to keep up with to continue to monitor her progress and she continues weekly therapy with her Physical therapist, occupational therapist and speech therapist as well as daily equipment she has to use at home.
In June of 2023, when the Duran family attended their second SMA Conference, they met Dr. Diana Castro. Dr. Castro took over Stella’s care in August of 2023, when she also started Stella on dual therapy with Evrysdi, which is taken daily, as a maintenance treatment to help further improve Stella’s muscles.”
In October of 2023 Stella’s family applied for Make-A-Wish, with the hopes of getting Stella an outdoor area in their backyard with toys and games she access and play with without having to be carried to them. “We sent in a request to see if she would qualify for a wish, just after her third birthday,” Duran said. “We found out in January of 2024 that Stella was going to be granted a wish based off of her diagnosis, Spinal Muscular Atrophy Type 1, which is a degenerative disease.”
In January of 2024, her family got word that Stella was going to be granted a wish.
“We talked to a coordinator in Dallas and she took some infor- mation from us for Stella, and then she put us into contact with a local wish designer in the Lubbock South Plains area. From there we waited for her to contact us for the next step,” she said. “Stella had already decided that she wanted to wish for outdoor toys. The wish director kind of helped us put into words, because outdoor toys is a very broad wish/ subject. We kind of helped her come up with the accessible pad for her outdoor toys that she can go out on without limitations and just be in her element.”
In February of 2024, Stella chose her wish: An accessible place in her backyard to play outdoors.
“The wish director sent the information to the wish designer here in Lubbock and we had been in contact with her,” she said. It took her a while to find a company that could lay the surfacing down, we wanted rubber surfacing so that it Stella wanted to sit on the ground, it wasn’t just concrete and it would be kind of cushioned for Stella. She doesn’t always like to be in her chair.”
In March of 2025, the family found out from their wish designer that Carpet Tech out of Lubbock was going to partner with Make-A-Wish to help make Stella’s wish come true.
“Our Wish Designer had a hard time finding a company to come out and do a residential area, but she never gave up on Stella’s first wish,” she said. “That was her top wish, she had to have three wishes to choose from, with one being her most wanted thing. And the wish designer finally found Carpet Tech to come out and lay the concrete and the pad.”
Stella had a Make-A-Wish announcement at Lubbock-Cooper Liberty High School in Lubbock.
“This was Lubbock-Cooper Liberty’s second year of choosing a fundraiser for their student council to raise money for,” the parents said. “They chose Make-A-Wish, and Stella’s wish was the most local recipient, who was closest to getting her wish granted. From what we understood, the money Liberty raised was going to go toward helping grant Stella’s wish.”
On August 9, 2025, the family left their home early in the morning, so that the wish family, who was bringing Stella’s new toys could come and set everything up. Upon returning home, family and friends had gathered in the backyard waiting for Stella and her family to come through the house to the backyard.
When she walked out the back door, she shouted “Nat Nat and Jaden come play with me.” Those are two of her cousins The family talked about what it meant to have everyone waiting in the back yard when they arrived, saying, “It means everything to have all of those people there with us to celebrate that day,” she said. “Something we’ve said from day one is that ‘Nobody in this family fights alone’, and ‘Her fight is our fight’. It just shows the amount of people who are here to support her and just be here and take it all in.”
Michael added, “It’s nice to have so many family members and friends who are close to Stella and care and understand that she fights hard and help her understand that she is not alone and neither is mom. It’s always a blessed feeling because it’s not always like that with every family.”
The family talked about how they came up with the idea for what was produced on the day of the reveal, saying, “Stella loves to be outside and being in a rural area, there aren’t a whole lot of accessible areas for young kids to play in. Even then to a certain extent, there is only so much stuff that is even out there in general, especially for kids in wheelchairs. We thought an accessible playground would be really neat, but there will be some aspects of it that she won’t be able to do and eventually, she will outgrow it.”
He added, “This is a home we plan on staying in for the long haul, we wanted to be sure that her wish was something that can kind of grow with her, and she will be use it as long as she can. Adding a little bit of character to the pad by adding the color rubber surfacing was nice and then just a lot of the stuff she can grow up with, such as the sensory activities and gardening and different water tables. She doesn’t require a lot to keep her entertained, she just wants company and that is how we landed on the idea that was produced today.”
Olivia added, “Her wish was to have outdoor toys and now she can play in water and sand, and play with bubbles and catch butterflies. That is what she is into.”
Stella will celebrate her fifth birthday on Thursday, August 21st.