Born over four months early, with cerebral palsy, Antonio Casali may not be able to walk or talk, but he has overcome more in the first three years of his life than doctors ever expected he’d be able to.
Part-time hairdresser and full-time caregiver, Melanie Casali, 33, from Michigan, suffered a major pregnancy complication that forced her to deliver Antonio when she was only 23 weeks along, rather than carrying him a full 40 weeks.
Antonio weighed only one pound and two ounces and was 11 inches long when Melanie delivered.
Looking at their tiny newborn son, Melanie and her husband couldn’t help but think of a Barbie doll, and Melanie was even afraid to touch his small body and fragile, translucent skin.
When he was about a year old, in 2016, it became clear that Antonio wasn’t moving the way other babies his age did, and he was diagnosed with spastic cerebral palsy.
‘The condition makes his muscles are stiff and tight making it difficult to move,’ his mother said.
Antonio has undergone nearly a dozen surgeries and procedures to try to ease some of the many problems is early birth led to and in spite of his developmental delays, the toddler, now three, is his parent’s pride and joy.
Antonio Casalie (front), now three, was born at just 23 weeks, weight just over one pound, and with cerebral palsy – but his father (center, unidentified) and mother, Melanie, couldn’t be more proud of their tiny fighter
Instead of spending the first days of his life taking in the new world, Antonio spent his in and out of four surgeries.
Doctors were uncertain that he would make it but he proved them all wrong, making his mom proud as she shares his journey on Instagram.
Since the first week of his life, he’s had to undergo more surgeries, including: two hernia repairs, laser eye surgery, a central line placed, Nissen fundoplication, a feeding tube fitted, eye alignment surgery and has even had Botox injected into his legs to help freeze his muscle tightness.
‘Antonio’s story…has been quite the roller coaster,’ Melanie said.
‘Just when things would slow down Antonio would throw us a curve ball.’
Melanie’s own journey has been tumultuous too.
He was born on a Sunday, and the morning began tranquilly as any other, until she noticed some bleeding.
Just in case, she went to the hospital.
Antonio was so tiny at birth, his mother was at first afraid to touch the infant, who she likened to a ‘Barbie doll’
At one pound, two ounces, Antonio weighed about as much as a baseball, and had to have several surgeries in his very first days of life
‘I was sent to obstetric triage where things continued to progress quickly, and we knew something was wrong,’ she said.
There, doctors realized Melanie was having a placental abruption. Normally, the placenta – the fluid-filled sac a baby develops in – separates from the uterine lining and is delivered along with the baby.
But in rare cases, this happens early, usually around 35 weeks, and this abruption is life-threatening to the underdeveloped baby inside.
It presents a conundrum for doctors and families. The baby can die if its left in the separated placenta in the womb, but the more prematurely a baby is born, the poorer its survival chances are
”The doctors wanted to keep Antonio in utero as long as possible, so I could receive steroid shots to help his underdeveloped lungs,’ Melanie explained.
She got through one round of shots before Antonio had to come out, via an emergency C-section.
Melanie felt she had an instant bond with Antonio, and that they were in a fight for his life, together
Cerebral palsy commonly co-occurs with prematurity. Antonio was diagnosed with a form that makes his muscles overly stiff and hard to move
When her son was born, Melanie looked at him with awe and adoration, but also with alarm.
‘My first reaction when I saw Antonio’s size was fear; he was not only so tiny, but his skin was so transparent, and his eyes fused shut,’ she recalled.
‘I was afraid to touch him because I didn’t want to hurt him. But I felt instantly connected to him and felt this determination to fight alongside him.’
His parents could do nothing but hold tight and hope their son, who weighed about as much as a baseball, would be okay.
‘We just were patiently waiting for a diagnosis to figure out what was going on,’ Melanie said.
‘His diagnosis and his prematurity go hand-in-hand, so it was just a matter of time before we got the official diagnosis.’
Once he made it through the initial woods in the first weeks of his life it took about a year for his family to get the next bit of clarity – the diagnosis of Antonio’s spastic diplegic cerebral palsy.
Melanie (left) documents Antonio’s journey on Instagram. Despite all the hurdles before him, Antonios’s parents say he’s both sweet and determined (right)
In layman’s terms, that means that ‘his muscles are really tight, and sometimes he has no control over them and it’s almost like they go into overdrive,’ Melanie said.
‘His condition also causes severe muscle spasms which can be extremely painful and can make his muscles even tighter.
‘This type of cerebral palsy is different to the regular because instead of his muscles being weak, they are very tight. This can make simple tasks even harder because he has to fight some of his tone or spasticity to move his body.’
His form of cerebral palsy is rare and incurable. His development is delayed enough that Antonio has missed major milestones, like walking and talking by now, but there’s no way to know how or if he may progress with time.
‘As difficult as the last almost four years have been, Antonio has continued to show us his strength and determination along the way. He has been through more in his life than many ever do in a lifetime,’ Melanie said.
She says that he has shown true determination at such a young age and wants to help raise awareness of his condition to educate people of what he is capable of.
‘The toughest part wasn’t hearing the diagnosis, it was hearing the neurologist at the time tell us all the things Antonio would never do,’ she said.
‘But instead of letting that doctor tell us all the things Antonio wouldn’t do, we found a different doctor that believed anything was possible.’
She says that no one expected her tiny baby to survive when he was born so early, but he proved them wrong, and continues to surpass medical expectations.
‘Antonio…proved many people wrong, and he’s obviously a fighter,’ she said.
Unlike most three-year-olds, Antonio can’t yet walk or talk – but he’s working on it in therapy
At home, he practices standing while playing with toys that help keep his mind engaged
‘We overcame hurdles but leaning on each other, my husband and I would research and talk to other parents with children with cerebral palsy and really educate ourselves.’
Melanie and her husband make it very much their business to stay on top of the latest cerebral palsy developments, but say there’s far more to their son than his condition.
‘I have felt and will always feel so proud of my son; no diagnosis can define him. He is not only the strongest little guy, but he also is so very sweet,’ Melanie said.
‘The only concern I have is if he will ever have any independence. If he is in a wheelchair, I want him to be able to move around freely as he wishes. Also, my concern is his happiness, I want him to be pain free and happy.
‘Family and friends are always so supportive and will compliment Antonio’s strength or say how he’s getting big.’
The Casali family and the friends, family and followers that have kept up with Antonio’s progress stay positive, but they also hope for changes that will make the world a little friendlier place for their son and others with disabilities.
‘We just want to just keep pushing forward in our lives, giving Antonio the best chance possible. I also want to bring more awareness to the kids and adults like Antonio and make the world more handicap accessible,’ she said.
‘Never stop believing in your child, even if it seems unrealistic at times and also don’t let a doctor tell you what your child can or cannot do, they do not have a crystal ball and cannot predict the future.’