This is the story of Fiona, as told by her Mom Tonja. Fiona was born with a rare brain abnormality and as a result, she didn’t have the strength to hold her body upright and walk.
This story shares Fiona’s experience only. The following is not reflective of results as investigated by a formal research study and reflects the experience of one family.
We will cover
- Fiona’s rare brain abnormality
- How Fiona came to get the Trexo
- Her Trexo usage that led to benefits such as more neck control, more verbalization and more brain activity
Fiona is a happy, friendly, sweet 9 year old who was born with a rare brain abnormality, called Holoprosencephaly. This is caused by abnormal brain development in utero. At six weeks after conception, the brain normally develops from the brain stem to the right and left hemisphere – Fiona’s stopped at the forefront of the brain. Cognitive, speech and fine motor skills are impacted by this. She also lives with Down Syndrome and has a heart defect called Tetralogy of Fallot.
While pregnant with Fiona, Tonja was concerned that things didn’t look good for her little girl. In the end, things turned out much better than she had thought. Fiona is the only person living with Down Syndrome after this brain abnormality. Tonja describes her daughter as always happy, easy to get along with, very friendly, she loves to laugh, to engage, playing with friends and music. She has a great personality. She also loves Taylor Swift!
Tonja went on to say that the Trexo was a no brainer for them, once she discovered it. Fiona’s muscles were weak and she didn’t have the muscle control to hold herself up and walk in a regular gait trainer.
Trexo has been a game changer for our family. Fiona is showing some independence, some engagement. I don’t think she would be in the place she is now, without Trexo. She’s happier, she’s getting neck control, she gets excited when she’s in her gait trainer. She’s starting to talk. We are hearing small words. This has changed Fiona’s life. It’s just the beginning. – Tonja
In early 2020, Tonja was diagnosed with breast cancer. Through time at chemo, she was looking for something to help make Fiona’s life easier. She came across Trexo and loved the videos of the kiddos. She noted the improved quality of life and the freedom that comes from walking.
After doing more research, she discovered all of the possible benefits of Trexo for Fiona. She knew she would need help getting the device so she began petitioning Make A Wish, hoping to get it through them. “It took almost a year. I was persistent. We were gifted a four month trial to determine if it would benefit Fiona and her life. What we found in a very short time was that she was developing neck control, starting to say small words, which never happened before. There as neuron to neuron activity.” Tonja shared.
They were the second family in the US to be granted a Wish to Walk and get a Trexo.
A big thank you to Billy Footwear and Rifton for contributing to Fiona’s Wish. The Trexo robotic legs sits on Rifton‘s Dynamic Gait Trainer and Fiona wore Billy Footwear which incorporates universal design through their zippers.
Committing to maximizing the benefits Fiona would experience, they had a goal of 1,200 steps in every session. Repetition helps the brain to start firing in a proper way, so consistent sessions taking steps was very beneficial to Fiona.
They started to see evidence of cognitive activity that they hadn’t seen before. Fiona started to communicate and make decisions. Her Mom also shared “Trexo has been a game changer for indepdence, she surprises herself and is proud of herself. She knows that she’s accomplishing something. We had never seen that before. I look forward to the future, for her, now.”
In addition to looking forward to the future, Tonja took a moment to look back. “The first time she took her first step in her Trexo, I could not hold back my tears, the whole house was overjoyed.” Tonja said.
Fiona wasn’t able to verbalize what she would wish for so her parents decided for her. “We picked this wish for Fiona in hopes that it would better her life.” Mom Tonja said in a post-wish interview and she is thrilled to have been right and to see all the changes and growth in Fiona.
“I’d like to say to Trexo, thank you so much. Everyone on your team. You have made a difference in my child’s life. You’ve made my dreams come true. Thank you, it means everything.” – Tonja R, Fiona’s Mom