Today, we’re telling you about Mary, just two years old, with a diagnosis of FOXP1 syndrome, a rare genetic neurodevelopmental disorder. But this story is truly about their entire family and a shared quality that makes them unstoppable. 

Thinking about Mary, a famous quote from Shakesphere keeps coming to mind: “Though she be but little, she is fierce.” When we asked Claire, Mary’s mom, what her superpower for overcoming challenges would be, there was no hesitation—determination.

After talking with Mary’s parents, if we were to assign them a superpower, there would also be no hesitation—determination. Together, they forge ahead one challenge at a time. Their strength of purpose keeps them working toward new goals, even when it’s difficult.

When Mary was about six months old, her parents began to notice that she was falling behind on key milestones. They began pursuing answers and were referred to a genetic specialist, where they were told Mary has the rare syndrome, FOXP1 syndrome. 

FOXP1 syndrome impacts most aspects of development, with low muscle tone affecting motor and speech development; cognitive impairments and behavioral challenges are also common. In addition, there is a broad range of health concerns to be managed.

Mary’s parents said receiving the diagnosis was a difficult day. But it was here that we saw the first spark of determination. Mom said, “After discovering how rare FOXP1 syndrome is, with limited research and understanding available, we were driven to learn as much as we could. Our first goal was to provide Mary with the best possible opportunities so she would reach her full potential.” Mary’s fine and gross motor skills were impacted by her low muscle tone. She didn’t have the endurance to crawl, interact with her toys, or sit without assistance. Her balance and coordination were also affected. 

Determined to see Mary thrive, her parents were ready to dig in and decided to start with physical therapy. They wanted to give Mary the ability to navigate her surroundings so she could move autonomously and explore the world. 

Very early on, Mary began working with Jen, the owner of Launch Pediatric Rehab. It wasn’t long before Mary’s development—in the words of her mom—EXPLODED! With hard work and fierce determination, Mary is making huge strides in walking, running, jumping, kicking, and in balance and squatting. 

These are tremendous WINS that she wasn’t able to do a year ago. Says mom, “Mary has blown us away by the strides she has made in such a short amount of time. She’s one hard-working and determined little two-year-old!”

Mom elaborates, “Mary’s therapy with Jen has been the biggest blessing to our family. Beyond giving Mary her own independence through movement, it’s taken away so much of the worry we used to feel about her physical challenges. We now feel confident doing the exercises at home and can easily work them into our everyday routines to keep her progress going.” 

Mary is already showing traits that will help her overcome her challenges. Her mom said, “Being determined sets Mary apart. She has always had a very strong personality, and when limitations hold her back from something she wants to do, she works extra hard. As she continues to make progress and gain new skills, her personality just shines.” 

“We’re watching her confidence grow with each new milestone. Every day, we are in awe of Mary’s determination to reach milestones that are just beyond her grasp. Despite every obstacle in her way, she never lets it hold her back.”

Watching Mary thrive brings so much joy to her parents. While they are filled with gratitude, the diagnosis of FOXP1 syndrome also places a heavy financial burden on the household budget. Managing Mary’s care involves multiple specialists. She has heart and kidney scans, visits to the ophthalmologist, ENT, and frequent medical appointments due to her weakened immune system. 

In addition, Mary’s therapy isn’t covered by insurance. Every visit is paid for out of pocket. Mary’s parents made a commitment to ensuring she reaches her full potential. Her happiness, confidence, and quality of life have been strengthened through her physical therapy. They were determined to keep moving ahead. 

Early On referred Mary’s parents to Family Hope Foundation. They said, “Receiving a scholarship has been such a huge blessing for our family. It has allowed Mary to keep making incredible progress and has given us the financial support we need to keep her journey moving forward. It feels really good to know that others believe in Mary’s potential and want to invest in her future.”

We asked Mary’s parents what the word HOPE means to them. They answered, “To us, hope means believing that the work we are putting in now will help Mary to reach her full potential. It is trusting that each step will bring her closer to independence in adulthood.”

We also asked about their dreams for Mary’s future. “We envision a bright future in which Mary grows into a happy, healthy adult with the independence and agency to shape her own successful life.” 

With the determination she’s shown so far, we know she’s got this!

After spending time with Mary’s family, we discovered there are many definitions for determination. As it applies to Mary and her family, we decided on “mental toughness and a strong sense of purpose that keeps you focused on a goal, even when it is difficult.” 

We’re excited to see what Mary achieves next. We’ll definitely be there to celebrate her WINS! With the determination she’s shown so far, we know she’s got this!