An adorable three-year-old girl with severe spina bifida whose mother was told to terminate her pregnancy has defied all the odds by learning how to walk.
On May 4, 2016, sales account manager, Erica Ardolino-Comparin, 37, from St. Petersburg, Florida, was told by her maternal-fetal medicine (MFM) specialist during her 18-week pregnancy scan appointment that her unborn child would be born with myeloschisis, the severest form of spina bifida aperta.
After giving Erica the worst-case scenario regarding her child’s diagnosis, he then went on to advise that she terminate the pregnancy, which Erica refused to do – despite the expert telling her that, if she was his wife, he would urge her to have an abortion.
Fighter: Three-year-old Harper-Mae was born with severe spina bifida and doctors thought that she would spend her life paralyzed from the belly button down
Overcoming obstacles: Harper-Mae’s mother Erica Ardolino-Comparin, 37, from St. Petersburg, Florida, was told by doctors to terminate her pregnancy
Inspiration: Despite doctors insisting that Harper-Mae would be unable to walk, the little girl began physical therapy in 2017, and quick began defying experts
But after some research on the condition, Erica felt more reassured to find out that it is possible for babies with spina bifida to learn how to walk in the future. On September 19, 2016, her daughter, Harper-Mae, now three, was born and she was smitten.
She was born paralyzed from the torso down and once she hit the age of walking, she had to use a walker to move around. The youngster has also had to undergo a series of operations in order to treat the symptoms of her condition.
Harper-Mae has had a total of nine surgeries in just three years.
The first one was when Erica was 25-weeks pregnant on her spine, along with seven brain procedures including one to monitor the pressures in her brain. The other six were for the treatment of her hydrocephalus, a condition where an accumulation of cerebrospinal fluid occurs within the brain.
Despite being told by doctors that Harper-Mae would like spend the majority of her life paralyzed from the belly button down, Erica and her husband Fred, 44, chose to push ahead with physical therapy in the hopes of giving their daughter at least some mobility.
In February 2017, Harper-Mae began physical therapy sessions where therapists organized activities for her to do to help with her mobility and strength. Harper’s physical therapy now includes obstacle courses, puzzles, and dancing around the room to music.
She started learning to walk with the help of a walker, and she progressed so well that her physical therapists determined that she may one day be able to take steps without it.
Role model: Harper-Mae, seen standing in front of a Johns Hopkins billboard with her picture on it, began learning to take steps with a walker – and is now able to walk without it
Helping hand: The little girl loves Disney and is now able to take trips to Disney World without using her walker
Support: Staff at the parks have helped Harper-Mae with her walking, inspiring her to push herself further and further on each visit
With the help from her parents, therapists and even trips to Disney World to meet all of her favorite characters, Harper-Mae reached her goal and no longer needs to use her walker full-time. Often Harper-Mae can be seen out and about walking without her walker, and only using it for long distances.
In April 2020, she made a significant breakthrough when she rode her bike without straps to hold her feet down for the first time. Erica and her husband, Fred, 44, were so proud of this moment and decided to share it with their social media family on Facebook and Instagram where she collectively has 4,400 followers.
‘We were devastated when we were advised to terminate the pregnancy. It felt like we had just lost our child even though we hadn’t,’ Erica said.
‘Even when we told the doctor we were choosing not to go ahead with the option to terminate, he proceeded to give us this option multiple times afterwards and even let me know that if I were his wife he would tell her the same thing.
‘Before Harper was born, our first MFM told us that Harper would be paralyzed from approximately mid-stomach/belly button down.
‘Once we met with our fetal surgery team, they let us know that there was still a good chance that Harper would have the ability to walk, and our lead MFM told us that he believed Harper would someday run.
‘Whilst we know that mobility and function does not define a child, nor would we ever let it define Harper or change our love for her, it was the most amazing moment to watch her begin to walk.
Struggle: Harper-Mae, pictured right with her mom in hospital, has undergone a total of nine surgeries in order to treat the symptoms of her rare condition
Pride: ‘Watching Harper’s progress and her showing that she is more than a medical diagnosis makes us extremely proud,’ Erica said
Upset: During the coronavirus pandemic, Erica admits Harper-Mae’s motivation has dipped, as normally she would be out there mixing with people, and visiting Disney World
‘We have been told on multiple occasions that Harper’s functional ability to walk and ambulate in the manner that she does is a true anomaly, and we love watching her work as hard as she does to keep progressing and gaining more and more strength.
‘Watching Harper’s progress and her showing that she is more than a medical diagnosis makes us extremely proud.
‘Whilst growing up with spina bifida isn’t always the easiest and certainly has its ups and downs, Harper has been able to live life just like a normal three-year-old little girl.
‘Multiple people have expressed their amazement when finding out that Harper has spina bifida, and that her opening began in the thoracic region of the spine.
‘They’ve told us that if they are having a difficult day, seeing one of Harper’s posts is just what they needed to put a smile on their face and make the day better.
Spina bifida is a type of neural tube defect; the tube gradually forms into the baby’s brain and spinal cord.
The neural tube starts to progress in early pregnancy and closes about four weeks post conception. In spina bifida, part of the neural tube doesn’t fully form or close properly which leads to defects in the spinal cord and bones of the spine.
Myeloschisis is the most severe type of spina bifida which is where the baby’s spinal canal remains open along several vertebrae in the back.
During these difficult times of the coronavirus pandemic, Erica admits that Harper-Mae’s motivation has dipped slightly, as normally she would be out there mixing with people, visiting her favorite places and rides in Disney World. Whilst at Disney World, Harper-Mae can even be seen dressed up like some of her favorite characters and cruising the parks in her custom-made walker designs.
Cuddle buddies: Since the lockdown measures put in place, Harper has had to adapt to home-style obstacle courses to keep her active and busy, but says that she doesn’t let it get her down
Friends: ‘Harper is very motivated to walk around Disney World to go see her favorite friends, go on rides and follow the parades down Main Street at Magic Kingdom,’ Erica explained
There she goes! The little girl has overcome every obstacle put in her way – and recently even learned how to ride a bike
However, since the strict lockdown measures put in place, she has had to adapt to home-style obstacle courses to keep her active and busy, but says that she doesn’t let it get her down.
Despite the difficult times we are all facing with COVID-19, Harper-Mae still managed to achieve a goal of riding a bike without holding her feet down, which Erica was over-the-moon about.
‘Harper’s physical therapy sessions vary based on the combined team’s goals for her (the team includes Harper, her mom and dad, and her physical therapists),’ she said.
‘Overall, Harper’s physical therapists work hard to make sure that she gets to have fun whilst doing her work.
‘They create obstacle courses for Harper to complete, let her do puzzles, play her favorite music for her, and let her play some of her favorite games whilst doing a variety of different exercises (climbing stairs, walking, side steps, high kneeling, static standing, etc).
‘One game that Harper plays a lot is going grocery shopping. Her therapists will put between 35 to 40 pounds in a kid-sized shopping trolley and lay toy food around the floor of the rehabilitation centre.
‘As she is pushing the cart, walking, she then has to bend down and pick the food up. Another one of Harper’s favorite activities is getting to jump while attached to bungies.
‘When they do this, they will often have Harper do a set of exercises while in the bungie system (doing step ups, etc) and then get to jump to the song of her choice as a reward.
‘The coronavirus virus has made it so that we have had to modify Harper’s exercise regimens.
‘Instead of having the motivation of walking all day long whilst at Disney World, we have had to modify our activities in order to best motivate Harper.
New normal: With Harper-Mae unable to visit her friends at Disney World, her parents have had to come up with new ways to motivate her during physical therapy
Working hard: ‘Instead of having the motivation of walking all day long whilst at Disney World, we have had to modify our activities in order to best motivate Harper,’ Erica said
Heartwarming: ‘We believe Harper is destined for great things and that she can help to change the world,’ Erica said
‘Harper is very motivated to walk around Disney World to go see her favorite friends, go on rides and follow the parades down Main Street at Magic Kingdom as she waves goodbye to Mickey Mouse at the end of the Festival of Fantasy Parade, whereas at home, Harper is not nearly as motivated to only go for walks down the street.
‘Instead of going on long walks, we have included more bike and scooter rides for Harper as these are two things Harper wants to learn to do better.
‘We began a Facebook page for Harper shortly after birth, and then began an Instagram page in the spring of 2019.
‘We had many friends who were very invested in seeing how Harper was progressing and keeping up with her story.
‘We felt this was an amazing opportunity to not only let our friends and family keep up to date with Harper but saw it as a great chance to spread positivity about spina bifida.
‘[A chance to] give newly diagnosed parents real life photos and information about a child with spina bifida, and to spread joy and happiness to as many people as possible.
‘We believe Harper is destined for great things and that she can help to change the world. At only three years old, Harper has been able to impact many people and we know that she will continue to do so for the rest of her life.
‘We truly feel that she will be a bright light in our world and that she will help to not only redefine spina bifida but change the perspective that people have about disabilities in general.’
For more information about Harper-Mae’s journey, you can visit her Facebook and Instagram page.