Sutton is a loving, inspirational, and brave five year old little girl. She resides in Lincoln, Nebraska with her mom, Sasha, her dad, Mike, and her sister, Leighton (3). She loves to sing, dance, and entertain everyone around her. Sutton is a ray of sunshine that this world desperately needs. She embodies perseverance, strength and hope and she encourages each and every person around her.
When Sutton’s mom was 34-weeks pregnant, she started to have some pain so the doctors decided it was time for Sutton to come out via c-section. She spent a month in the NICU to work on eating and other typical preterm infant needs. She was able to come home after a month and was a typical baby.
At 6 months old, Sasha noticed that Sutton’s right leg turned out and when she brought it up to the pediatrician it was recommended that they start physical therapy. After nine months of physical therapy, the physical therapist expressed concern about Sutton’s lack of strength. She was unable to sit or stand unassisted and was not attempting to crawl or get up on all fours. The doctors assured them that these issues were most likely due to the fact that Sutton was a preemie and she just needed more time.
After six months with little change, Sasha started to really push doctors to figure out what was going on. Around this time Sutton got pneumonia and one of the doctors noticed that Sutton’s hands looked odd. He asked Sasha if she ever considered having her looked at. So, from 12 months old to 18 months old Sutton had numerous tests done to see if they could figure anything out, but every test came back normal. They finally completed the whole exome sequencing test, which came back inconclusive. “She had three different gene mutations that cause diseases like congenital muscular dystrophy (CMD). At that point they said ‘we believe she has congenital muscular dystrophy.’ So, that’s what we went with,” Sasha shares. They joined local support groups, support groups on social media, and groups nationally, and began to immerse themselves into the CMD world.
At this point Sutton had just turned 18 months old. She had an electromyography test (EMG) completed and the test showed that her nerves did not respond and that she likely had spinal muscular atrophy. The doctors informed Sasha and Mike that this was fatal and not to look it up because they would not want to know what the internet has to say about it. However, they ended up finding out that Sutton did not have spinal muscular atrophy.
Sasha continued to seek support from the congenital muscular dystrophy world. Congenital muscular dystrophy families expressed that Sutton did not seem to fit the typical CMD mold. Sutton was a lot weaker than a typical CMD child and she was also very cognitively aware, which floored the doctors. Sasha and Mike ended up going to a CMD conference when Sutton was two years old. Families encouraged Sasha to meet with a doctor there who was very good at diagnosing children. The doctor requested all of Sutton’s medical records and after reviewing them he knew he would need more time with the family and asked them to come five days before the conference so they could meet. “We sat with him for maybe twenty minutes and his team said, ‘She does not have congenital muscular dystrophy.’ There’s nothing wrong with her muscles. When they did that EMG her nerves never worked so they should have diagnosed her with neuropathy at that point,’” Sasha explains. While they were there they completed a skin biopsy of Sutton and three years later Sasha and Mike still do not have the results from the biopsy. “They also put Sutton’s genes into mice and they’re watching them currently,” Sasha shares.
They went home from this meeting with the fact that Sutton had a rare form of neuropathy. They brought her home and the doctor they met with encouraged them to go home and work on getting her spinal surgery due to Sutton’s extreme scoliosis she had. They met with local doctors and they all said that Sutton needed to gain more weight. “This is probably our biggest regret in our journey. They pushed and pushed us to get a g-tube. She got a g-tube in 2017 and within a month her lung had collapsed and the next several months she was in and out of the intensive care unit. She has ended up being ventilator bipap dependent since then,” Sasha shares.
“Once her lung collapsed I started panicking and googling and going back and looking at all her crazy medical and genetic testing and googling every mutation she ever had. I found a disease called spinal muscular atrophy with respiratory distress type 1 (SMARD 1), which was super rare. I found a couple kids online with it and talked with their parents and for the first time Sutton looked way more similar to these kiddos than she did the CMD kiddos,” Sasha says. She called the Institute of Health doctors and told them she was panicking and that her daughter was on a BiPap and unable to gain weight and she was worried she had SMARD. A couple days later they called her back and told her that they were pretty sure she was right and that was what Sutton had. They were sent to a new set of doctors six hours away who had some patients with this same disease. “Those doctors and our doctors in Washington actually cannot agree. The doctors in Iowa say they’re not convinced she’s very atypical, her hands are way weaker, and just little things. The Washington doctors say that she matches it to a t. So, this is kind of where we are at right now,” Sasha explains. Sutton continues to baffle doctors and there is no doctor that can say with 100% certainty what exactly is going on with her. “They say right now that the medical technology is just not advanced enough to dig that deep into the genes,” Sasha shares. Sutton has since had spinal rods placed in order to fix her spine so that it is not pushing on her lungs any longer. Since then she has not battled a cold or a virus and is able to take small breaks from wearing her mask.
Whether or not they have set answers on Sutton’s diagnosis, that does not stop Sasha and Mike from living and loving life together and it certainly does not stop Sutton. She currently goes to an incredible private school in Lincoln, Nebraska. Sutton and her family are very supported and loved for at this school. The school has been more than willing and happy to learn how to accommodate Sutton’s needs so that she can thrive. She has an amazing group of friends who encourage and love her and who also learn so much from her on a daily basis. Sutton has such a beautiful personality and desires to share her story with the world. Her mom recently shared that Sutton has a desire to eventually start her own VLOG and could use it to educate others, “she said she could show people how she plays soccer in her wheelchair and talk to others about how they can play with her,” Sasha shares. Sutton is someone who will make big changes in this world and her story will leave a large imprint on your heart.
Time to get loud shouters!
Throughout the month of November we will be shouting love for Sutton and one other Lincoln, Nebraska family. It is a great honor to be able to tell Sutton’s story and we hope you will join us in getting to know her and her family.
So click here to shop now where every purchase will go towards installing an elevator in their home making it more accessible for Sutton. You can also start a monthly subscription and shout love for great families each month!
Join us in shouting loud for Sutton!