The joy of riding a bike is something many people accomplish at a young age.
But for 34-year-old Bo Boyd, that dream is still just out of reach.
Boyd was born and raised in Poplarville. During her pregnancy Betty High had no idea her first born son would be diagnosed with Angelman Syndrome before his tenth birthday.
According to angelman.org, AS is a rare neuro-genetic disorder that occurs in one in 15,000 births and is often misdiagnosed as cerebral palsy or autism. Characteristics of AS include developmental delay, lack of speech, seizures and walking and balance disorders.
When Boyd was born, doctors diagnosed him with failure to thrive, High said.
“He couldn’t suck a bottle,” she said. “When he was a year old, they diagnosed him with cerebral palsy. The first few years of his life were tough. Doctors couldn’t tell us why he couldn’t stand on his legs. We were sent from one doctor to the next.”
Finally, a local neurologist sent the family to Children’s Hospital in Jackson, where Boyd was clinically diagnosed with AS. Two days before his 10th birthday, Boyd took his first steps.
“In 1982, there wasn’t much information out there,” High said. “I learned as much as I could about it on a daily basis. Now, they are testing for cures and there are many trials out there.”
High said many born with AS have a healthy lifespan, however, Boyd requires around the clock care.
He suffered mini strokes, which affected his esophagus so he has trouble swallowing. His food has to be finely chopped. He also has trouble with circulation in his legs, High added.
AS also damages an individual’s vocal chords.
“Some kids learn sign language,” she said. “He was nine when we found out. We didn’t know that the speech wouldn’t come like the doctors told us it would. He can say ‘mama,’ ‘bye bye’ and in the past month he has learned to say ‘drink.’ He understands what you’re telling him.”
Boyd’s mother said he loves to hold things such as books, magazines and sales papers.
He is administered medicine for a chemical imbalance in his brain, for strokes and anxiety.
Boyd becomes nervous in crowds.
“Doctors said it’s like he’s got his head in a bucket and hearing everyone talk,” High said. “We let him know what’s going to happen ahead of time. We live around him, if it suits his need then we do it.”
Boyd started kindergarten at five with other special needs children in the Poplarville School District and graduated from the high school.
On a daily basis, he enjoys putting together puzzles, watching movies, singing, dancing, sitting on the porch waving at traffic and participating in outdoor activities, his mother said. He loves attending church and singing gospel music. His daily activities begin at 6:30 a.m. every morning with a cup of coffee, which he loves, High said.
He sleeps in a hospital bed in the living room and every night, High brings a mattress into the room to sleep next to her son. In 34 years, she has only spent two nights away from her son.
However, more than anything, Boyd wants to ride a bike. But he needs a special bike to do so, High said.
Outside their Poplarville home, High and Boyd’s 8-year-old niece Nevaeh High help him onto his non-special needs bike. He is unable to push the pedals and get off and on by himself.
“He tries to ride,” High said. “It just eats me up and breaks my heart. A lot of people take for granted things with their kids.”
Saturday, the family is hosting a bake sale and carwash to raise funds for a special needs bike for Boyd. The bike costs about $1,700, sits lower to the ground and requires little pressure to push the pedals.
The event will be held at Greer’s at 1221 South Main Street, Poplarville from 10 a.m. to 4 p.m. Donations will also be accepted. Benefit accounts have been opened at Hancock and Whitney Banks under the name Bo Bo Boyd. For more information visit the Facebook page “Bo just wants to ride his bike.”
High said if she had to go back and do it all over again, she would.
“God chose me to be his mom,” she said. “If my own mom was here, I would tell her thanks. I couldn’t have done it without her. The name is fitting, he’s like a little angel to me.”