Conquering Chiari One Step At a Time in Levittown

September is Chiari awareness month.  All across America a walk is held on the same day to raise money for research and spread awareness of the neurological disorder.

In patients with chiari the bottom of the brain, the cerebellum descends out of the skull. Pressure is put on the brain and spine causing a multitude of health problems.

This is the second year that a walk will be held in Levittown.

Christine and Donald Mulherin organize the walk in remembrance of their daughter Ashtyn Jeanne Mulherin who passed away in October 2010 from complications of chiari. They also have a daughter Alyssa who was diagnosed with chiari.

“I don’t want anyone to go through what Ashtyn did,” said Christine.

There is another family from Levittown familiar with the struggles of everyday life with this condition.

Niki and Steven Ramirez of Levittown have four daughters who suffer from the disorder. Twins  Shayna and Bryanna, 7, Arianna, 3 and Giovanna 16 months old.

The first to be diagnosed with the disorder was Shayna.

At 18 months she began having seizures. It was during an MRI looking for the cause of seizures that the doctors discovered she had Chiari. Shayna is the only one of the four girls who has not had surgery.

After learning of Shayna’s disorder Niki wanted her other daughter Bryanna tested. Bryanna was having trouble walking, talking, fine motor skills and crying a lot.

One month later Bryanna had the first of 23 chiari surgeries.

The first surgery was a decompression. Every three months Bryanna needed another surgery  until she was five.  Her last Surgery was in November 2012.

Bryanna has had four decompression surgeries, a shunt, shunt revisions, a titanium plate placed in the back of her head to keep it from sagging, cerebellar tonsils removed, skull shaved down and fenestrations.

“She begins with symptoms like eye deviations,” said Ramirez.  ”And she begins having trouble walking.”

Many complications follow after Bryanna’s surgeries.Twice she developed syrinx and now has some nerve and muscle damage along with no short-term memory.

Bryanna cannot run and play with the same stamina as her friends.

“All I want  to do is run like everyone else,” she once told her therapist, according to Ramirez.

“She won’t complain of pain and if she cries you know it is really bad,” said Ramirez. “Anything that could go wrong has.”

The twins came home as perfectly healthy babies until they were 18 months old. They would aspirate on reflux.  Part of their stomach is tied around their esophagus to avoid choking on reflux.  They eat solid foods OK but have feeding tubes in their stomach for drinking.

Arianna has had one surgery so far. She will undergo her second in September, according to Ramirez.

“She has become incontinent after being potty trained,” said Ramirez. “She doesn’t even know what is happening.”

“She was becoming a hazard to herself-tripping and her legs giving out,” said Ramirez.

So far Giovanna has gone under the knife twice.

But according to Ramirez, Giovanna has the worst case of chiari in the family.

“The day I had her she aspirated so horribly,” said Ramirez. “The goal was to wait until she was one year old to do an MRI.”

“But she stopped growing at four months old,” said Ramirez, “The doctors became alarmed,”

At eight months old a swallow study was done revealing that Giovanna was a horrible aspirator. She was put on a feeding tube like her sisters.

After her second surgery she is reaching milestones and walking.

“They took extra skull from her this time,” said Ramirez. “That was just what she needed.”

Giavanna moves at the swift speed of a 16 month old now.

Despite all the family has gone through, they are all smiles with a positive outlook. Spreading awareness is the goal now.

“I wouldn’t be able to go through all this without all the support I have,” said Ramirez. “I would have lost it.”

“I don’t want to see anyone suffer like my kids have,” said Ramirez.

According to the American Association of Neurological Surgeons, more than 10,000 surgeries for Chiari are  performed each year.

There is no genetic test for Chiari, although research has found more than 100 families with multiple family members affected.

Conquer Chiari Walk Across America

Falls Township Community Park

Saturday,September 21

Registration starts at 11 am

Walk begins at noon

For more information on Chiari go to www.conquerchiari.org.