Jackson’s Journey with Moebius Syndrome
Born with a rare neurological condition, Jackson continues to beat the odds and thrive with support from KenCrest.
By Sydney Kerelo
Two and a half years ago, one Bucks County family welcomed a beautiful baby boy into their family, but they were met with an unexpected surprise. Unknowingly to them, he had an extremely rare neurological condition that affects one in four million people, called Moebius Syndrome. But while it surprised the family, it hasn’t stopped Jackson.
Known around the hospitals as a medical mystery, Jackson has taken his diagnosis in stride, breaking stigmas and continuing to make significant advancements with the help of his therapists at KenCrest and Children’s Hospital of Philadelphia (CHOP).
In the U.S., Moebius syndrome affects less than 50,000 people. It is caused by the underdevelopment of the sixth and seventh cranial nerves in utero, which control facial expressions and eye movements.
Children born with Moebius Syndrome cannot suck from the mouth, the first indicator of the syndrome. Other symptoms include feeding, swallowing, and choking problems, excessive drooling, crossed eyes, lack of facial expression, inability to smile, sensitive eyes, motor delays, high or cleft palate, hearing and speech difficulties, and the inability to move the eyes back and forth.
“It caught us off guard. We walked into the hospital thinking we were having baby number two, but it didn’t go like that,” says Trish Roberts, Jackson’s mom, and advocate. “It was very traumatizing and scary. It was my first time riding in an ambulance, and I remember walking into CHOP and this team of people greeting us. They said they may not be able to give us all the answers, but they’ll do everything to get them, and when I heard that, it warmed my heart.”
After Jackson was born, he was instantly taken to the NICU at Redeemer Health before being transferred to CHOP. For the first few months of Jackson’s life, he was on feeding tubes, had various lines put in, and had several MRI’s done to determine the severity of his Moebius Syndrome.
At two days old, Trish and her husband Chris finally saw Jackson’s face clearly for the first time.
Since that day, he’s seen around 10 CHOP specialists and regularly has sessions with KenCrest’s Early Intervention team for physical therapy, aqua therapy, and vision and speech therapy. He also still sees a feeding team at CHOP.
Plus, Jackson’s older sister Mila has been a big help and advocate; at just three years old, when Jackson was born, she did everything she could to help him, including assisting in changing his feeding tubes. She has become his cheerleader and even works with his therapists to learn how to support him better.
“[KenCrest’s therapist] Holly has been with us since the beginning, and she’s greatly supported Jackson, my husband, and me,” says Trish. “We’re so grateful for all his therapists because some days I’ve just cried to them about how hard this is, and they’ve listened, let me bounce ideas off of them, and helped us navigate this journey.”
Photos courtesy of Trish Roberts
At two and a half years old, Jackson has made great strides with his Moebius Syndrome, and he’s recently had three eye surgeries, with a fourth scheduled for August to help his eyes straighten. Next month, he will get help with his slight hearing loss by undergoing a sedated Auditory Brainstem Response (ABR) test to see how the hearing nerves and brain respond to sounds.
But while he still has a long battle ahead of him, Jackson is making strides faster than his doctors could’ve imagined.
“I’ve had two specialists tell him that he’s a mystery,” laughs Trish. “Numerous people have told me that he doesn’t match his medical charts, and one day he even proved me wrong.”
“We went to the St. Padre Pio shrine, and Jackson wasn’t quite sitting up alone yet,” says Trish. “I would prop him up, and he would immediately fall over, but that day I noticed a whole setup perfect for a photo op, and when I propped him up against the wall, he stayed sitting up. So, I quickly ran and snapped a photo of it, and underneath him was a sign that says, ‘I am a mystery even upon myself.’”
“We call it ‘Jackson’s Journey’ because he still has a long road ahead of him, but his progress is mind-blowing,” Trish adds.
And it didn’t stop there; after that day, Jackson took his first steps, ate a whole yogurt for the first time, started solids, and learned to communicate through sign language. According to Trish, he knows more sign language than actual words, but they are working to advance his speech. His first word was ‘Coco’ for Coco Melon, and then came ‘Mama’ and ‘Go.’ Now he says, ‘Thank you,’ ‘Dad,’ and calls his older sister Mila, ‘La.’
“I want other families who are going through this time to know that no matter how scary it is or how traumatizing the news is, never set limits on yourself or your child,” says Trish. “Jackson has a long journey ahead, but he is thriving and determined; he’s a perfect example of perseverance.”
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