Jaxon Strong

Big miracles come in small packages. Jaxon Buell, a 15-month-old baby who was expected to die in the womb, has touched the hearts of people throughout the world with his incredible story of hope, strength, and survival.

Although he is hooked to a feeding tube, 1-year-old Jaxon Buell cheerfully sits on his mother’s lap. She places a green toy turtle in front of him that plays music with the touch of a button.

“Okay, I want you to hit one of these buttons for me,” says the boy’s mother, Brittany Buell. “Come on, make mommy proud!”

The boy with adorable big blue eyes, dark blond hair, and rosy, chubby cheeks looks curiously at his mother. About 30 seconds later, he extends his tiny hand and pushes a button. Music plays. A smile forms across Jaxon’s face because music is calming to him.

“Great job, Jaxon,” says Brittany, gently stroking his back. “I knew you could do it!”

Jaxon responds to mommy’s praise by wrapping his upper and lower lip around her nose.

“That’s how he kisses me,” said Brittany, 27. “He eats my nose. It’s so darn cute.”

For Jaxon, these developmental milestones are extraordinary.

This is the boy with a deformed brain and skull whom doctors gave no chance to live, much less comprehend words or show displays of affection. In fact, they advised Brittany to terminate her pregnancy at 23 weeks because Jaxon would likely die in the womb or shortly after birth. Very seldom do babies with Jaxon’s condition—microhydranencephaly—survive more than a few days or weeks.

Microhydranencephaly is a rare abnormality of the brain that leads to profound developmental delay and severe intellectual disability. Jaxon’s brain, which is one-fifth the size of a normal brain, lacks cerebral hemispheres and is occupied by cerebrospinal fluid. The boy suffers from seizures, gastrointestinal problems, and occasional infections.

Dr. Heather Olson, a leading neurological specialist at Boston Children’s Hospital, summed up Jaxon’s condition in these words: “I see infants with rare illnesses and syndromes, but Jaxon’s is the rarest of the rarest.”

However, the resilient boy has proven to have equally rare “super” powers: he’s a super fighter, a super warrior, and super cute. And he has found his way into the hearts of people all over the world by defying both medical science and insurmountable odds.

On August 27, 2015, his parents, Brandon and Brittany Buell of Tavares, celebrated not only the first anniversary of Jaxon’s birth, but also the commemoration of a medical miracle.

“To us, Jaxon is not a kid with special needs; he is just perfect the way he is,” said Brandon, 30, who is employed at First Green Bank in Mount Dora as an assistant to the chief executive officer. “Brittany and I are blessed that we’re the ones who get to be parents of this awesome boy.”

A plan and a purpose

Brittany was 17 weeks pregnant when doctors delivered the grim results from her second ultrasound scan. Her baby was three weeks behind in his development, and his head was abnormally small. Although the Buells visited several specialists, none could accurately pinpoint the problem. Jaxon was first diagnosed with spina bifida, then Dandy-Walker syndrome, and then Joubert syndrome.

But they all agreed on one thing: the boy would be born with severe disabilities and likely would not live more than a few days or weeks. A specialist in Orlando recommended abortion, but the devout Christian couple wanted their child to die naturally.

“We decided abortion was not going to be an option,” Brittany said. “Doctors told us Jaxon was not suffering and that remaining pregnant was not going to harm my body in any way. It wasn’t a hard decision because we decided God would be the one to take Jaxon to heaven. We weren’t going to be the ones to kill him.”

The baby was born by caesarian section on August 27, 2014. Not only did the Buells give Jaxon life; they’ve graciously shared him with the world.

Because Jaxon outlived doctors’ expectations and achieved feats once deemed impossible, a friend of the Buells created a Facebook page called “Jaxon Strong” to document the boy’s life. The page has steadily climbed to 267,951 worldwide followers who faithfully follow Jaxon’s milestones, such as saying “mama” and “dada,” crying to indicate he’s hungry or wants to be held, and learning to crawl by scooting forward. Those same fans proudly post Facebook pictures of themselves wearing blue “Jaxon Strong” wristbands.

His fans see Jaxon not as a boy with a deformed skull but rather as a symbol of hope, courage, and strength.

“People are amazed not only by Jaxon’s incredible story of survival, but also by his accomplishments,” Brittany said. “We were told he would never be able to see, hear, walk, crawl, comprehend, or communicate when he’s hungry. When he was born, his fists were always clenched. He has learned to unclench them and has become coordinated enough where he can grab and hug a stuffed basketball. Whenever Jaxon wants to be held, he communicates to us in a low-pitch cry.”

When Jaxon miraculously celebrated his first birthday, his story spread like wildfire on social network sites and mainstream media. Actor Ashton Kutcher posted a picture of Jaxon on his Facebook page and called him “an amazing boy.” He received stuffed animals from adoring fans far away as Australia and Switzerland and hand-drawn pictures from admirers in Germany. He has made appearances on ABC’s “Nightline,” as well as the television show “The Doctors.” Jaxon has also been prominently featured in newspapers throughout the world.

Most of the publicity has been positive. However, some are openly critical of the Buells for birthing a baby with a severe life-limiting illness. In fact, one journalist described their decision to have Jaxon as “cruel and inhumane.” Brandon and Brittany shrug off hateful comments and never second-guess their decision. After all, they see up close and personal how their son’s tiny footprints are changing the hearts and minds of so many people.

“One man contacted me and told me that he was never a spiritual person,” Brittany said. “However, he read about Jaxon and said his story is nothing short of a miracle. He has completely changed his mind about religion. Also, I talked to a gynecologist who was taught in medical school to recommend terminating a pregnancy when she came across situations like Jaxon’s. Because of Jaxon, she said she would no longer suggest abortion to families.”

Their decision to bring Jaxon into this world is paving the way for additional research on microhydranencephaly. After Jaxon endured two months of continuous seizures and nonstop screaming, the Buells flew to Boston in August 2015 to have Jaxon admitted to Boston Children’s Hospital, a leading facility for pediatric neurology. That’s where they received Jaxon’s official diagnosis, nearly one year after he was born. They learned that their child has a functioning brain stem that allows him to breathe, but doctors said he’d likely never talk or walk on his own.

During their stay, the Buells forged a strong relationship with the hospital’s doctors and administrators and are allowing tests to be performed on Jaxon to determine whether his condition is genetically related. Brandon and Brittany also plan to donate money to the hospital’s genetic nonprofit program to benefit medical research related to Jaxon’s condition.

“When we started this journey we were scared and clueless because Jaxon’s condition is so rare,” Brandon said. “We want more information and resources to be available for parents who have children with microhydranencephaly. To see all the wonderful things that are happening because of Jaxon is truly amazing. He has only been here a short while, but he has already touched and inspired more people than I ever will in a lifetime. There is definitely a plan and a purpose for his life.”

Unconditional love

Jaxon’s story is a window into a life unfathomable to most—a child without most of his brain—and the depths of a father’s and mother’s love.

During her pregnancy, Brittany resigned from her job at a local publishing company due to the severity of Jaxon’s situation and the uncertainty of his lifespan. The realization that taking care of Jaxon would be a full-time job in itself became apparent when the baby spent the first three weeks of his life hospitalized in a neonatal unit while hooked to a feeding tube. However, Jaxon defied odds by surviving those first three weeks. As a result, his parents refused hospice care when they brought him home.

“I cancelled hospice because it’s for dying people,” Brittany said. “We always had hope that he would live longer than doctors predicted.”

Shortly after Jaxon was born, a colleague of Brandon’s started a GoFundMe page for the family. To date, $150,778 has been raised thanks to the kindness of 3,504 generous donors. The money helps offset the single-income family’s accumulating medical expenses and allows Brittany to remain by Jaxon’s side throughout the day, offering the necessary care and comfort only a mother can provide.

Brittany relishes those special moments with Jaxon. But she admits raising a child with a rare health condition is a monumental task because complications constantly arise. Since his birth, Jaxon has been hospitalized three times for rhinitis, an inflammation of the mucous membrane that makes breathing difficult. Brittany must also closely monitor him when he suffers from light seizures—he sometimes has 10 episodes a day—that cause his arms to tremble and legs to kick simultaneously.

He has periodic check-ups with a neurologist to control his seizures and regularly visits another specialist to treat severe gastrointestinal issues. Because Jaxon cannot swallow, he is hooked 20 hours each day to a feeding tube that delivers hypoallergenic baby formula. He also undergoes regular physical therapy sessions to learn tasks like sitting up straight without leaning over and falling.

“Sometimes I have to take him to a doctor as many as three times a week,” Brittany said. “When unexpected things like rashes or infections pop up, I have to take him to a pediatrician. Raising a child with special needs is difficult. Right now the house needs to be cleaned, and I have six loads of laundry that need to be done. Taking care of him is a job for sure.”

Taking Jaxon in public presents other unique challenges.

“When I enter a grocery store and begin to separate grocery carts, the noise scares Jaxon and causes him to have a startled seizure. Also, being strapped down in a car seat causes him to scream bloody murder. He also screams whenever drivers honk their horns.”

Through it all, though, the Buells have managed to adapt to the hardships and difficulties that arise, which is a small price to pay for a boy who fills their lives with joy and satisfaction and fills their hearts with love and happiness. That’s evident every time Brandon arrives home from work and hears Jaxon say “dada.”

“He’ll swing his head around and smile at me,” Brandon said. “His reactions are very specific to me, and that’s a big step for him to recognize us. I love Jaxon more every single day because of what he endures. Seeing him show affection and love toward us is such an overwhelming and proud occasion. It’s incredible, actually.”

Special moments like those are daily reminders that being a parent to Jaxon is more of a blessing than a struggle.

“God saw strength and courage in us that we didn’t know was there,” Brittany said. “When he screamed for three straight months, we were patient and understanding. We try to make every situation positive because the last thing Jaxon needs is to see us stressing.”

The Buells readily acknowledge that they’ll likely outlive their son, but they rarely think about that possibility. That’s something they will deal with if and when the time comes.

“One of Jaxon’s favorite activities is snuggling with us while we read a book to him,” Brandon said. “We cherish moments like those and take one day at a time. We feel blessed by each day we get to spend with Jaxon because we don’t know what the future holds.”

This much they do know: They gave their son a fighting chance, and their miraculous baby has seized the opportunity by fighting back every day of his life.

BOY MEETS WORLD

Jaxon Buell’s courageous story started right here in Lake County. The boy has become a national and international sensation, appearing in newspapers, magazines, websites and television shows throughout the world.

• Cosmopolitan
• MSN.com
• NY Daily News
• Today.com (The Today Show)
• The Boston Globe
• Examiner.com (Denver)
• CNN
• The Doctors
• ABC Nightline
• National Right to Life News
• Global News
• Daily Mail (Britain)
• PEOPLE Magazine
(German edition)
• RTL Group (a European
entertainment network)
• The Daily Mirror (Britain)
• Zee News (India)
• BBC News (Latin America)
• Athens Voice (Greece)

PHOTOS: Fred Lopez and Brenda Anderson