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Miles Moss: Not stopped by Guillain–Barré

HOLMES BEACH – To anyone seeing him on the playground at Anna Maria Elementary School or on the field at the Island’s community center, Miles Moss looks like any 8-year-old boy. Kicking the soccer ball on the field or in the gym at The Center, Miles has excelled as a young athlete.

But it has not been an easy road for Miles to reach his position as one of the top youth goalkeepers in The Center’s recreational leagues.

Over Thanksgiving break 2016, Miles’ mother, Emily, worked as the Youth Programs Director for The Center of Anna Maria Island and had a week of fun-filled activities planned for The Center’s campers, but one November morning would forever change her family’s world.

On Nov. 21, 2016, a switch seemingly went off in Miles’ body, rendering him unable to stand or gain stability. Taking time away from the business he recently started with his uncle, Miles’ dad, Ryan, immediately took his son to the doctor, who rushed them to All Children’s Hospital in St. Petersburg.

With conditions worsening, pain at the touch and loss of movement progressed. Testing and speculation began. The possible diagnoses ranged from encephalitis to spinal myelitis. Negative or inconclusive tests led to preventive treatments, with no improvement for Miles.

As testing continued, Miles slowly became paralyzed.

“He could no longer sit up, eat, drink or speak,” his mom said.

In excruciating pain, his spinal tap resulted in a Guillain–Barré Syndrome diagnosis. The head neurologist at All Children’s expressed to the Moss parents that Miles was the youngest patient he had seen with this diagnosis.

Miles Moss: Not stopped by Guillain–Barré
After a long road of recovery, the Moss family can look back at their journey with Guillain-Barré Syndrome as a distant memory. – Submitted

Guillain-Barré is a rare disorder in which the body’s immune system attacks part of the peripheral nervous system, affecting the signals to the brain, causing weakness, numbness, pain, temperature and touch sensitivities, paralysis, as well as difficulty swallowing and breathing.

The future was unknown for the entire Moss family. Because of Miles’ young age, lack of research and experience meant uncharted territory for medical professionals and everyone else involved in his recovery. The progression to recovery that typically is seen within a few weeks in most patients was not the case for Miles.

The road to recovery was up and down until Miles was well enough to start the therapy necessary to move him back to his home. During the next weeks, he started three hours of hard work a day for occupation, speech and physical therapy.

Earning the nickname “Smiles” at The School for Constructive Play, Miles brought his infectious personality with him while he worked through his daily recovery with his mom in the hospital. While Emily was with Miles, co-worker, Rainia Lardas, kept youth programs at The Center running smoothly, allowing Emily to focus on her son’s health.

Making the trip back and forth to Tampa when possible and spending weekends at the hospital, Ryan and Miles’ older brother, Mason, poured love and support into his recovery. Thanks to the Tampa Ronald McDonald House, the family had a place to escape the hospital setting for emotional and physical recovery as caregivers.

Working and growing his then-new construction company, Moss Builders, Ryan tirelessly supported Miles’ recovery.

Learning to walk again, starting with a crawl to walking with braces, Miles eventually worked up to returning to school. With sports and other daily activities, Ryan helped him regain his confidence.

According to Emily, “Ryan and Mason both helped coach and encourage him in sports and would always cheer for him along the way.

“Mason was such a trooper through it all. He never complained about the long car rides to Tampa after school, or coming for the weekends,” his mom said. According to Emily, Mason would make games out of his brother’s therapy, helping him to get through his exercises.

After more than a month at All Children’s, Miles was finally on his way home, but the road to recovery continued at Blake Hospital. The journey was not easy and it was not overnight.

Over three years later, “Miles has made a full recovery as far as we can tell,” Emily said. Completing his last therapy session in February 2020, Miles has been able to resume a full and active life.

Miles Moss: Not stopped by Guillain–Barré
Recovered from Guillain-Barré Syndrome, Miles Moss is now playing lacrosse with older brother, Mason. – Submitted

Playing sports with Mason, now 12, Miles has been dominating the soccer field both inside and outside at The Center along with his brother.

“There is always a fierce competition with his older brother, Mason, in all things,” Emily said of Miles.

In the most recent seasons, Miles has been one of the top goalies in The Center’s youth leagues and has been playing in his designated age group, as well as the older leagues.

Being an Island kid, he loves chatting it up with people fishing at the City Pier or helping the waitresses at Slim’s Place, the location of his “dream job.”

“Sometimes, when I look back at the photos, it’s hard to believe that was even my life at one point,” Emily said.

Seemingly with the hard part behind them, the Moss family is thankful that Miles thrives today. His mom’s statement of pride says it all.

“Miles is confident and loves being in the spotlight. He wants to be ‘famous’ like his dad and brother, who are often found in the sports section of the local newspaper,” she said.

The confident third grader, with the love and support of his family and the community, goes through life today like any other 8-year-old after enduring the life-altering impacts of Guillain–Barré Syndrome.

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