Living With Fragile X

Little Ty Dixon seemed like a normal baby, but at age 6 his parents — Angela and Brian Dixon of Galax — found they had been blessed with something special.

As an infant, Ty sat up and crawled early. But as he grew into a toddler, red flags went up for Angela and Brian.

Ty didn’t walk until 19 months. And by age 3, when toddlers speak in full sentences, Ty was only saying a couple of words here and there, and potty training became a challenge.

“My first reaction was he’ll grow out of it,” said Angela Dixon, but still something just didn’t seem right.

At Gladeville Elementary School, Ty was evaluated through an IQ test and scored extremely low.

Ty was diagnosed with Fragile X just last year after being sent to the University of Virginia for a DNA blood test. Fragile X is the most common cause of inherited mental impairment, which can range from learning disabilities to mental retardation. Fragile X is caused by a defect in the X chromosome.

The genetic condition that can impact an entire family is also the most common known cause of autism or autistic-like behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.

“Ty has the ideas in his head, it’s just hard to get them out of him,” said Angela. “People think he doesn’t know what’s going on, but he fully understands. He’s just not able to communicate them.”

Angela was a little hesitant to tell her story in fear that Ty, now 7 years old, would be seen and treated as something other than a normal child.

However, she decided it was time to unravel her story about Fragile X to stress the importance of early intervention and testing for the disorder.

“I haven’t came across one doctor around here who knows what Fragile X is,” said Dixon, “except for Ty's doctor in Roanoke.”

With so many people carrying Fragile X mutations, it often goes undiagnosed because some carriers might not exhibit symptoms. But the gene can be passed on, and the further it is passed on the more profound it can become in those displaying symptoms.

In female carriers, it can cause early menopause In men, it can cause Parkinson’s disease.

Dixon said some children may be tested and diagnosed with autism, but not Fragile X, and the therapies may be different. “Any child who has Fragile X symptoms needs to see a doctor to get tested,” said Dixon. Now that Ty is in speech and occupational therapy, he'll develop more as he ages.

Like autism, there is no cure for Fragile X, but problems associated with the syndrome can be improved through various treatments, such as speech, occupational and physical therapies. Medications are also available for individuals with hyperactivity, poor attention, aggression, anxiety or depression.

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At first, the devastation left the Dixons feeling overwhelmed with uncertainties and questions. But seeing through their child’s eyes, Angela and Brian have a new-found perspective and take it as a blessing. “I know God has a purpose, and we can use this for good.”

Ty may lack communication, writing and reading skills, but he has incredible characteristics that many children — or even adults — don’t have, such as his compassion, admiration of others and love of life.

Ty takes very little for granted. With a curiosity for everything, Ty closely listens to the birds chirping and the green scenery around him. He goes to bed and wakes up smiling.

His underdeveloped communication skills don’t stop him from wanting to get right in the conversation. He runs to his mom, puts his arm around her neck and gives her a big kiss on the cheek while laughing.

Even though hyperactivity is a symptom of Fragile X, one signature difference of autism is that individuals with the syndrome are very compassionate and want to interact, Angela said.

“He’s very social and cares a lot about others. At Christmas, he gets more enjoyment out of watching others open gifts.

“If you laugh, he laughs with you. If you cry, he cries with you.”

Angela said she doesn’t know how he learned to be so polite, but Ty is constantly complemented on his use of thank you and please.

“He started that on his own,” she said.

Ty struggles to climb stairs, peddle his tricycle and even grip a pencil and wants so badly to play with the other children, but his lack of strength won't let him catch or kick a ball.

Instead, Ty uses special pencil grips and visual aids to help him learn.

“I know it’s hard for other children to understand,” said Dixon. “But I just hope they will accept and love Ty, and so far, the kids at school have been good to him.”

In the back yard of his house, Ty seems completely normal. He’s running, swinging and playing on his battery-operated John Deere tractor.

Inside, his eyes are peeled on “The Andy Griffith Show.”

Ty isn’t considered autistic, but like most with Fragile X, he displays the symptoms.

Ty deals with sensory difficulties — loud noises and crowded rooms can send him into a spiraling tantrum, screaming, kicking and spitting.

“He gets nervous and immediately wants to leave,” said Dixon. “He gets so stimulated he doesn’t know what to do.”

Also similar to autism, Ty has to have a routine day. If not, he has outbursts.

To avoid conflict, Ty is warned at school 10 minutes ahead of time when it’s time to make a transition between lunch and classes.

Recently, Ty had his parents facing the scare of their lives. As part of Fragile X, Ty suffers from seizures. His body goes limp and his eyes roll to one side.

“Ty has already had five in the past two years,” said Angela, breaking into tears. “But it got really bad in June.”

In critical condition, Ty was airlifted to a hospital in Roanoke.

“As a mom and dad, it’s hard to see your child go through that. But it’s out of your hands, and you just have to pray.”

Ty made a full recovery in seven days. Now, he is on seizure medication and is expected to grow out of them.

Angela, who was forced to become a stay-at-home mom, said the daily mental strain and worries of Fragile X can really take a toll on a marriage.

“But through this, our marriage has become stronger. I just want him to learn as much as he can and be as independent as possible.”

Ty, in occupational and speech therapies provided by Carroll County Schools, has come a long way in his communication skills over the past year, communicating with longer sentences and clearer speech.

Ty spends time in a normal classroom during story time and calendar time, and partly in a specialized class. “We’ve learned to take small steps,” said Angela.

Over the summer, Brian Dixon attended a Fragile X conference in St. Louis, Mo., gathering information on the syndrome, support and questions.

Information will be given to Carroll County Schools that shows how to better educate individuals with Fragile X.

Testing is expensive, Angela said, but some insurance companies will cover most of it. If not, Angela suggests that parents talk with doctors about financial help.

Fragile X Symptoms

• Attention problems

• Delayed development

• Delayed speech

• Poor eye contact

• Hand flapping

• Long, narrow face

• Prominent ears and forehead

Physical features may not develop until puberty and individuals may not exhibit these or all characteristics.

Angela Dixon hopes to start a Fragile X parent support group. To contact Angela about this, call 236-5605.

For more information about Fragile X, call 1-800-688-8765 or visit www.fragilex.org.