By Linda Le Park - Citizen Staff Writer
Published: Thursday, May 15, 2008 3:59 PM PDT

Just a year ago, 7-year-old Hana Beddawi went from not being able to chew, having constant seizures and nearly being put on a feeding tube to walking, playing and eating today.

Hana was diagnosed with Angelman Syndrome, a disorder that includes developmental delays, speech impairment, movement or balance disorder and seizures, in addition to many other problems.

"Since she was born, we knew something was wrong because she wouldn't cry. She would look like she was going to cry, but she would not utter any sound," Hana's mother Marylin Beddawi said. "As the months progressed, she wouldn't behave like regular kids."

As a baby, Hana never sat erect on her own, needing pillows to prop her up. When she would eat, her tongue would protrude out instead of swallowing the usual way.

"When she was looking at you, you felt as if she really was not looking at you, she was looking through you," Marylin said.

It was not until Hana was nine months old, after going back and forth from different doctors, that she finally saw a neurologist who diagnosed her based on her symptoms and tests.

"It has been quite challenging, because we feel as if the rug has been pulled out from under our feet," Marylin said. "You were saving for college and now we are saving for her future needs, but she has been getting lots of help."

Last year was the hardest for Hana and her family. She had constant back-to-back seizures, including toniclonic seizures, where her whole body would jerk. After several tries, they were finally able to find the right medication to stop the seizures.

"Before she was on the chair like a vegetable. The seizures were so bad that we were considering putting a feeding tube in her because she was not able to swallow appropriately," Marylin said. ""Since then, she has been seizure free for up to a year, since March of last year, and she has been doing well."

Hana is the youngest of four children in her family. Her mother describes her as being very friendly, loving and expressive.

"Even though she does not speak, she lets you know what she wants and what she does not want," Marylin said. "She has been a really big joy in our life."

Hana is a popular student at her school, Foulks Ranch Elementary School, where she is in Patricia Gibson's second grade class.

"Hana has been with her peers since Kindergarten, so she has been a strong part of our classroom community, the culture of our classroom and the students love her," Gibson said. "The students clamor to sit next to her during floor activities."

Gibson said that she has noticed that Hana has become stronger, even sitting up more erect now.

She is also eating solid foods, such as carrots, apples and even pizza. This is much different than the soft food diet Hana was previously on.

To help her adapt to the classroom setting, Hana's school has an inclusion specialist, Cindy Sasaki and her in-class assistant Donna Audycki.

Audycki stays with Hana at all times while she is in the classroom, giving her the assistance she needs.

"If you talk to any student on this campus, I think they will tell you, she is probably the most popular student here at Foulks Ranch," Audycki said. "She is extremely well known, and her personality warms everyone's heart."

In fact, Hana is referred to as the "Hannah Montana" of Foulks Ranch Elementary School. On the playground, she is known to have at least 15 other children run over to play with her.

Right now, Hana's main focus in school is learning communication. She is using a picture program to help communicate her needs to others.

Hana has also been attending physical therapy at Laguna Physical Therapy & Hand Rehabilitation, working with Kristy Milanese.

"We come out and work on her being able to walk. Last year at this time she was sitting in a chair," Milanese said. "She is now able to get up, and is able to walk if she is holding on to your hand. She is practically running now."

Right now, Hana's main goal through physical therapy is to walk without assistance and to be able to access all of the playground equipment on her own.

"It's a team approach, from the school to the parents and the physical therapy that makes it happen," Milanese said.

Parents of children with Angelman Syndrome also need support, which is why there are various groups for them to network and share stories and ideas with each other.

According to the Angelman Syndrome Foundation, the syndrome affects one in every 15,000 children and young adults.

"Angelman Syndrome is a devastating disease because it changes your whole life. When [Hana] looks at me, its like everything is going to be OK," Marylin said. "Us parents need the support of the community and the importance of getting the word out."

To help raise money for education and research on Angelman Syndrome, there is the annual ASF Walk-A-Thon, which takes place in 19 different cities nationwide, including Sacramento.

This year's three-mile walk will be at William Land Park on May 17 at 9 a.m.

Stacie Vetterli, another Elk Grove mother whose son has Angelman Syndrome, will be walking in the walk-a-thon with Marylin along with several of the faculty members at Hana's school.

This is the second year that Sacramento has hosted the walk for Angelman Syndrome.

"Last year we were able to gross $184,000 for this, and it was the top grossing walk," Vetterli said.

Vetterli's son, Zachary, is also 7 years old. He was diagnosed with the syndrome two weeks after his first birthday.

As far as they know, there are six children in Elk Grove with Angelman Syndrome.

"I think it is important for the community to know what this syndrome is. There are kids who have been misdiagnosed with autism instead of Angelman," Marylin said. "I think the exposure of the walk-a-thon and the importance of contributing as a community is going to be helpful to kids like Hana."

For additional information about the ASF Walk-A-Thon or to make a donation, contact Marylin Beddawi at mbeddawi@yahoo.com or contact Stacie Vetterli at ssvetterli@yahoo.com.

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