Playground princess returns
Little Rayne Shellhamer dreams of one day becoming a princess.
When at play, little Rayne Shellhamer might as well wear a crown.
She is cute as can be and is adored by everyone. That's because she is comfortable playing with boys as well as with girls. That kind of diplomacy might come in handy one day because Rayne dreams of becoming a princess. In a way, it's a typical, alluring fantasy for girls her age.
But for the past few years, Rayne has been suffering from something not so typical - recurrent headaches.
The pain wasn't at the front of her head. It was at the rear, at the base of her skull.
She sometimes had other complaints, too.
"Mommy, I can't feel my hands and feet," she'd occasionally say.
Were these comments normal for a child of three? Was she just being silly? Or was something serious happening? Her parents weren't sure. But they wanted answers, and so Rayne visited doctors.
As normal as she was, Rayne, of Tamaqua, also tended to be "very cranky" and was sensitive to light.
Turns out, she began taking occasional seizures.
Rayne was a second child. None of these symptoms had been present with sister Madison, now 14.
Rayne eventually exhibited behavioral issues and was taken to a psychologist.
Ultimately, she was diagnosed with Chiari Malformation (CM). CM is a birth defect in which the back compartment of the skull is too small. It results in overcrowding of the brain and neurological tissues.
Essentially, the lower part of the cerebellum hangs down through the opening at the bottom of the skull and blocks the flow of cerebrospinal fluid.
"Your brain herniates down through the opening that the spinal cord goes through," explains Rayne's dad, Rodney Leopard. "It puts pressure on the spinal cord."
Other symptoms include: choking, imbalance, acute weakness, tingling hands, dizziness, swallowing issues, insomnia, neck pain and ringing in the ears.
Some children born with CM may not show symptoms until adolescence, if at all.
Sadly, the condition often goes undiagnosed. In fact, it's even unfamiliar to many in the medical field. The only treatment is surgery.
Luckily for Rayne, 6, her parents listened to what she was saying. Both are attuned to health matters because both are employed in health care-related fields.
Rayne's mom, Julie Shellhamer Leopard, a Tamaqua native, works for Omnicare in long-term care pharmacy while dad Rodney, a native of South Carolina, works in distribution for Fisher Clinical Services.
The couple's perseverance to help Rayne led to a double diagnosis, as Rayne was diagnosed with epilepsy in 2010.
Then, in October, 2011, at the tender age of 3-1/2, she underwent brain surgery performed by a neurosurgeon at Geisinger Medical Center, Danville.
She had a piece of her skull removed along with her first vertebrae. It was a stressful time, not only for Rayne, but for her worried parents.
"It was hard for me," says Julie. "It was brain surgery. But if I didn't do it, there would've been too many 'ifs.'"
Since the surgery, Rayne's complaints have dropped off significantly.
She still experiences difficulty with pain in her knees and feet. However, that might be a result of another condition. In June, 2013, Rayne was diagnosed with hypermotility, or having joints that move in excess of normal range of motion. Rayne still needs testing to determine if she suffers from Ehlers-Danlos syndrome, a more widespread connective tissue disorder.
Rayne continues to be sensitive to excessive heat and humidity, and reacts to changes in barometric pressure. She also becomes weary when at play. But overall, Rayne has improved since the brain surgery.
A vibrant, caring child, Rayne is a special-needs student who will enter first grade at Rush Elmentary in the Tamaqua Area School District in the fall.
For a time, she'll need to take care and avoid any sudden, severe movements in her neck area, such as a whiplash-type effect that can happen while playing.
Julie has a message for other parents. She wants them to know that the most important first step in identifying CM is to pay close attention to what your child says and to trust your inner instincts.
"Listen to your child. Listen to your gut. Not everyone who has a headache has Chiari. But a doctor at the University of Chicago says that 99.99 percent of headaches at the back of the head or at the base of the skull are Chiari."
And because medical professionals are often unfamiliar with the condition, Julie says parents need to "make your doctor listen to you. If not treated, it can become serious. There are children who've died of it."
Rodney explains the results of a CM worst-case scenario.
"If it cuts off the fluid in the spinal cord, it cuts off the flow, resulting in paralysis or death." And Rodney says parents need to be aware that CM is often underdiagnosed because medical professionals are unfamiliar with it.
"It's still new (to them). A lot of doctors don't seem to think it causes a problem."
Julie has been active with fundraising and awareness campaigns to help spread the word. But she says it's difficult to raise money for a condition that doesn't have big-name influence or a snappy catch phrase.
CM is obscure, and for that reason, CM fundraisers face an uphill battle.
"We sent a letter out to local businesses and didn't receive one donation," she says. "And every day I fight for my child's survival."
Julie helped to organize a bowling event held in Hometown in early August. She is currently selling t-shirts for a CM charity walk set for September 21st.
"Our team's name is Rayne's Brain Team and we attend the Philadelphia walk," she says.
(More information about the walk or about CM can be obtained by contacting Julie at: firstname.lastname@example.org).
Another point to keep in mind, they say, is that one needn't be a child to suffer symptoms and effects of CM.
Some folks have had problems with it their entire lives, and have undergone surgery at just about any age.
"There are people 35 to 40 years old who've had the surgery," says Rodney.
As for Rayne, she takes five different medications each day to control the CM and seizures. But the pills aren't a cure. CM is a lifelong condition.
But Julie and Rodney share in the eternal hope of every parent - that their child enjoys a long, healthy, fulfilling life.
"I know she's never going to be cured," says Julie. "My hope is that she is stable for the rest of her life, that she doesn't have to undergo any more surgery, and that she lives as normal as possible."
With brain surgery behind her, Rayne happily frolics with playmates. The nasty scar has healed and nothing stands in her way.
The little princess of South Ward Playground is back on her throne, and long may she reign.